tag:blogger.com,1999:blog-28245599679832444682024-03-05T21:44:35.608-08:00Fighting For Mayabjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-2824559967983244468.post-1849843826206976262019-07-28T15:15:00.003-07:002019-07-28T15:15:45.501-07:00A #FightingForMaya Update: "Like a Picture on a Sunny Day"<br />
<br />
<br />
<span style="font-size: large;">A #FightingForMaya Update</span>: <span style="font-size: large;">"Like a Picture on a Sunny Day"</span><br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTBVpjifgOiM7xkvog7_dhc0lI7rdtXkthbQIb_3JEtJ_TImPMmNB7P5fqm9RyBJr-HonINtX0c2ejmRKJ57lT5ogbgMdXpZHTWPwtZFvuhqTBrQ8GwojHADh_e4MXHFBzDGu4dAfJkwM/s1600/mayastairs+6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1040" data-original-width="780" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTBVpjifgOiM7xkvog7_dhc0lI7rdtXkthbQIb_3JEtJ_TImPMmNB7P5fqm9RyBJr-HonINtX0c2ejmRKJ57lT5ogbgMdXpZHTWPwtZFvuhqTBrQ8GwojHADh_e4MXHFBzDGu4dAfJkwM/s640/mayastairs+6.jpg" width="480" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKPpu7-0LYJZvfs2jOkjCQjUJhbrp9SrMBxN5vDtvuHhotLtyOlahsfFJ_407XDxToB9drcSCYseg3oAum3iD0Ac9-VROHhJ7rF7IqWrILXRUoUg8f9zwsMPFeL3Q6aoh4UhFC88mhIpA/s1600/mayastairs5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1040" data-original-width="780" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKPpu7-0LYJZvfs2jOkjCQjUJhbrp9SrMBxN5vDtvuHhotLtyOlahsfFJ_407XDxToB9drcSCYseg3oAum3iD0Ac9-VROHhJ7rF7IqWrILXRUoUg8f9zwsMPFeL3Q6aoh4UhFC88mhIpA/s640/mayastairs5.jpg" width="480" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHyZ1anQwVhBZENCC7mda4yhtz25ys62FcMNtsSzVKDDVXELClPJm8zXrAXK0uAk0gAzL_Iy_-us5l-FKD3B8iAvghusa4GuosANkQ2AfA3Ny-NQcx_4gPhyh9hyphenhyphenXlbAom5_nItLnIR1E/s1600/Maya_stairs.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1138" data-original-width="854" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHyZ1anQwVhBZENCC7mda4yhtz25ys62FcMNtsSzVKDDVXELClPJm8zXrAXK0uAk0gAzL_Iy_-us5l-FKD3B8iAvghusa4GuosANkQ2AfA3Ny-NQcx_4gPhyh9hyphenhyphenXlbAom5_nItLnIR1E/s640/Maya_stairs.jpg" width="480" /></a><br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ4v6_WNOj71Ds6HPDcDJXwKi6QAadEqX7Y95-qIgYl2fkqvZG1wM7iE1uMJtw27YEwgb2MiKgYDrjfgDw_hswROqztkoRY1fL4xmepIvMKIjZlk9nFn8G_jOqTNn-XaSUiZbzrWkonUM/s1600/maya+stairs2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1040" data-original-width="780" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ4v6_WNOj71Ds6HPDcDJXwKi6QAadEqX7Y95-qIgYl2fkqvZG1wM7iE1uMJtw27YEwgb2MiKgYDrjfgDw_hswROqztkoRY1fL4xmepIvMKIjZlk9nFn8G_jOqTNn-XaSUiZbzrWkonUM/s640/maya+stairs2.jpg" width="480" /></a><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<h4>
<span style="text-align: center;"><span style="font-size: xx-small;">Photo Credit: Xavi_EL_Nino</span></span></h4>
<span style="font-weight: normal;"><br /></span>
<span style="font-weight: normal;">We're back. Our visit to the North East Kingdom of Vermont was AWESOME!!!</span><br />
<span style="font-weight: normal;"><br /></span>
I'd love to write a ton and tell you all about it, but I'm tired. We landed a little after midnight and our heads hit pillows around 2am (<i>i.e</i>., 5am eastern).<br />
<br />
Right now, we're at CHOC (Children's Hospital of Orange County) for our infusion. Thank you to our amazing CHOC team for coming in on a Sunday and supporting our much needed family vacation. We truly appreciate your love and support.<br />
<br />
To our friends and family in Vermont, words will not do it justice. Thank you for another amazing visit. Thank you for sharing amazing meals, great stories, incredible adventures and your beautiful home. We love you.<br />
<br />
If you are new to our story or just trying to figure out the significance of our cross country treks to Vermont, then check out one of our previous family videos <a href="https://youtu.be/CMInyX7BkhM" target="_blank">here</a>, <a href="https://youtu.be/PaFBjwdA3pM" target="_blank">here</a> or <a href="https://youtu.be/h3Y1g3oYKn0" target="_blank">here</a>.<br />
<br />
I should probably write more, but know that Maya (and our entire family) had a wonderful trip.<br />
<br />
Selfishly, I'm going to wrap with this <a href="https://www.youtube.com/watch?v=KK8gtGOJK6Q" target="_blank">Song</a> and a couple more pictures.<br />
<br />
Thanks for reading.<br />
<br />
#FightingForMaya<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZDWUyVSifaZOmc5c99T8_cJFtpaG5AioRpnJBcgRXJ3kPkrtLxdSQUiD58SMfhJsc8qJhN1D_6fhLZcKS5x5CCAUgNY7mefkQWhtU8K50aWmCU0bH6Bri6DUGG2SicY_p8qqHZLjEiH8/s1600/IMG_20190714_180425.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZDWUyVSifaZOmc5c99T8_cJFtpaG5AioRpnJBcgRXJ3kPkrtLxdSQUiD58SMfhJsc8qJhN1D_6fhLZcKS5x5CCAUgNY7mefkQWhtU8K50aWmCU0bH6Bri6DUGG2SicY_p8qqHZLjEiH8/s400/IMG_20190714_180425.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtPu7HbSX7TsOdoQVmWCxTXKhqcTAj6CF_K88kebUYfE5RMvcQzT0yeaiokTETlL2osw7AHRHYzrNanQfpphDUV30e6maLnyH1eFV-AUOk1Rn5qfpkiHULViRja_g9u1I7IclDsu2xRd0/s1600/IMG_20190716_202708.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtPu7HbSX7TsOdoQVmWCxTXKhqcTAj6CF_K88kebUYfE5RMvcQzT0yeaiokTETlL2osw7AHRHYzrNanQfpphDUV30e6maLnyH1eFV-AUOk1Rn5qfpkiHULViRja_g9u1I7IclDsu2xRd0/s400/IMG_20190716_202708.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiYEkUK57RbqcpIPCsM-AeEA3LHDSG0FgeDVAOQ4FBRjXpiOP9CuXBV4ZXsK92wnFi8itwlBBZ0s59Zw-sNakuH9FGM-gXLCzx6j59vct-JrFc2y3r1GXSHUaqlys-txkuYjesKWuE7-g/s1600/IMG_20190717_125347.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiYEkUK57RbqcpIPCsM-AeEA3LHDSG0FgeDVAOQ4FBRjXpiOP9CuXBV4ZXsK92wnFi8itwlBBZ0s59Zw-sNakuH9FGM-gXLCzx6j59vct-JrFc2y3r1GXSHUaqlys-txkuYjesKWuE7-g/s400/IMG_20190717_125347.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_-3oAiyOTbSitajV3dNLK3qE6T_bRKTvefC1D_GVfKP5jqxuo6bGb5um2DP435hyN_dvhXOnEwc2foEgj_u4CxXxG6xH7WBrMitynLuZib7ZOp93PyNSsa71Tdal6nV-iDQcWyUHWyDE/s1600/IMG_20190717_170233.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_-3oAiyOTbSitajV3dNLK3qE6T_bRKTvefC1D_GVfKP5jqxuo6bGb5um2DP435hyN_dvhXOnEwc2foEgj_u4CxXxG6xH7WBrMitynLuZib7ZOp93PyNSsa71Tdal6nV-iDQcWyUHWyDE/s400/IMG_20190717_170233.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimluQQO4tgbkTQeDZi_WtXCNbloB0BV2iaHtYr2qBfXwr-awdfH0Xy7P_Uv9pt4fu1X9Qh-WbZoK7G8g0l9VAGh-KSQY0hGRqbQ5h2QOgqGwVoyWvzOcAVNvsGD0RbrpCz0GYJ4eHa4iA/s1600/IMG_20190717_172120.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimluQQO4tgbkTQeDZi_WtXCNbloB0BV2iaHtYr2qBfXwr-awdfH0Xy7P_Uv9pt4fu1X9Qh-WbZoK7G8g0l9VAGh-KSQY0hGRqbQ5h2QOgqGwVoyWvzOcAVNvsGD0RbrpCz0GYJ4eHa4iA/s400/IMG_20190717_172120.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucR8Np4DwATMflEJ5JRFA-0N968tJsWefWoWfPcR4KRK-l7rE_KNznOATFBGk5mMI22NMB5HHW1zcC07dda557b8ZTHbOVgB3zEFhokufGsHdTwa_UoEW3PjhiNiv7gohVijVhanGcwA/s1600/IMG_20190718_084539-PANO.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="642" data-original-width="1600" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucR8Np4DwATMflEJ5JRFA-0N968tJsWefWoWfPcR4KRK-l7rE_KNznOATFBGk5mMI22NMB5HHW1zcC07dda557b8ZTHbOVgB3zEFhokufGsHdTwa_UoEW3PjhiNiv7gohVijVhanGcwA/s640/IMG_20190718_084539-PANO.jpg" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUz65SfplLjbw5cYoZFs8xLMrOOAtEnocX4UgD-1SpBTCLUAdKK_geHp5corBqLYb8vCK6iwag9cRatOonPKQWwmAF52gUgg_P35NVibdqcwF8cwkhxyqepKS_HpyPm3lObBYn9e9bxPI/s1600/IMG_20190718_142834.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUz65SfplLjbw5cYoZFs8xLMrOOAtEnocX4UgD-1SpBTCLUAdKK_geHp5corBqLYb8vCK6iwag9cRatOonPKQWwmAF52gUgg_P35NVibdqcwF8cwkhxyqepKS_HpyPm3lObBYn9e9bxPI/s400/IMG_20190718_142834.jpg" width="225" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmKWLI-3c350A7JXkBeSA-GvddUk0ts3NVqokNs1CtWSnCKZ9sto77b-MsUvPmqI_Itf82uXi7AGJE_UaN2JBBGBT23ZWRkUW1ryCHN-NlxMgUEMFvI9JHU_QrXsJWHdr4-QV34HXr-KA/s1600/IMG_20190724_194142-EFFECTS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmKWLI-3c350A7JXkBeSA-GvddUk0ts3NVqokNs1CtWSnCKZ9sto77b-MsUvPmqI_Itf82uXi7AGJE_UaN2JBBGBT23ZWRkUW1ryCHN-NlxMgUEMFvI9JHU_QrXsJWHdr4-QV34HXr-KA/s400/IMG_20190724_194142-EFFECTS.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRB6IRQXSzpHh8D-zY3SUwoE7EiiuAp6F__SsSHaGpqhyphenhyphenho0sJVee67DRSSiGirHNdwnITucoc0x2w7qc5kjIjkOh7ckwLQr5CQjSZszeTFU8u3APh2SHNoAwUBE0oBNIpsQPQw1_aJm0/s1600/IMG_20190724_195722_043.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1512" data-original-width="1512" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRB6IRQXSzpHh8D-zY3SUwoE7EiiuAp6F__SsSHaGpqhyphenhyphenho0sJVee67DRSSiGirHNdwnITucoc0x2w7qc5kjIjkOh7ckwLQr5CQjSZszeTFU8u3APh2SHNoAwUBE0oBNIpsQPQw1_aJm0/s400/IMG_20190724_195722_043.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxYG4ihhBBgLIycfMb70g9IuonDVDlyLo4Dx5PwPVUV4DcEGH-JaTnbz4x3og1O7JZhS4b8GT6S8d1qENy7PyCSUHuHxFIW7BoK-U6f_Z8JOanmUhDdg3KvphM8IUa1UY5cmcF4cSTE08/s1600/MVIMG_20190714_052818.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxYG4ihhBBgLIycfMb70g9IuonDVDlyLo4Dx5PwPVUV4DcEGH-JaTnbz4x3og1O7JZhS4b8GT6S8d1qENy7PyCSUHuHxFIW7BoK-U6f_Z8JOanmUhDdg3KvphM8IUa1UY5cmcF4cSTE08/s400/MVIMG_20190714_052818.jpg" width="400" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-64282180504788952172018-08-26T18:05:00.002-07:002018-08-26T18:05:51.530-07:00A FightingForMaya Update: I Had a Good Day!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLGkFjHd0Gl5676yo5xl4kP8vN0Fg1nv4s5tIP6_7z3hmpjZOoICxLLHgoOKSgh1vbPZuJfeZ349G5GqheOkOYj7ze90iuyHApUgKlwwqcqVRhHjpi6AxdGFbtutQOr1cCu5VXZl-IlQY/s1600/signal-2018-07-27-164037.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLGkFjHd0Gl5676yo5xl4kP8vN0Fg1nv4s5tIP6_7z3hmpjZOoICxLLHgoOKSgh1vbPZuJfeZ349G5GqheOkOYj7ze90iuyHApUgKlwwqcqVRhHjpi6AxdGFbtutQOr1cCu5VXZl-IlQY/s400/signal-2018-07-27-164037.jpg" width="400" /></a></div>
<br />
<span style="font-size: large;"><br /></span>
<div style="text-align: center;">
<span style="font-size: large;">"<b>I Had A Good Day!!"</b></span></div>
<b><br /></b>
This was the text I received from Maya one recent afternoon.<br />
<br />
I received the message almost a year to the day from when I first spoke with a friend about the possibility of making a move. This wasn't just any move, but involved leaving my job of ten years, uprooting my family, saying goodbye to friends and starting anew in Los Angeles.<br />
<br />
It was Maya's message, that reminded me that we had made the right decision.<br />
<br />
*****<br />
<br />
For all of our followers, it has been way too long. If you follow on FB or Instagram, then you know that we are doing well. We're settling into Los Angeles, making new friends, missing old friends and finding our way.<br />
<br />
The boys are riding their bikes, exploring the neighborhood and having a grand time. We've found a new soccer club and it is more than a club... "Its Framily" (I couldn't resist).<br />
<br />
We're doing well.<br />
<br />
*****<br />
<br />
How is Maya?<br />
<br />
She is well. If you can't tell, she absolutely loves her Swim Therapy. It is the highlight of her week. She loves the exercises and more importantly, she loves her instructor and the fact that they are friends on Instagram.<br />
<br />
In terms of the disorder, it is still the monster in the corner of the room. Maya's speech is very difficult to understand and she is still dependent upon others (or mobility devices) to get around.... but you know what, I'm not complaining.<br />
<br />
This October will be Maya's two year anniversary of receiving treatment. No matter how much I want or wish it could be better, deep down I know that we are blessed. I am truly thankful for every day that I can come home, speak with Maya about her day and have a good laugh. These moments are priceless and I am thankful for those who have sacrificed to make it possible.<br />
<br />
****<br />
What's next?<br />
<br />
We are approaching our final year of the research project at <a href="http://waystogive.texaschildrens.org/scar7" target="_blank">Texas Children's Hospital</a>. To date, with your help, we have raised $145,000 of the $200,000... WOOT, WOOT. If you haven't or if its been awhile, consider making a donation directly to the project at the above link. The project at Texas Children's Hospital is specifically studying Maya's form of the disorder as well as the classic form.<br />
<br />
After lots of requests, we're going to open up another run of #FightingForMaya shirts. If this is your first shirt or if you need a refresh, please feel free and order <a href="https://www.customink.com/fundraising/fighting-for-maya-2018">here.</a> All profits from the shirts go to the research project at Texas Children's Hospital. Delivery time is about four weeks from the date of this blog.<br />
<br />
As always, once you receive your shirts, feel free to post a selfie and tag it with #FightingForMaya. <br />
<br />
A good friend told me the other day, there is nothing more amazing than wearing your #FightingForMaya shirt, having someone ask about it and sharing Maya's story. Trust me, It makes a difference.<br />
<br />
As always, thank you for your continued love and support.<br />
<br />
#FightingForMaya<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPDxKmA8DdqQF_ojjn8QEN4heDZ54ktNPh15NGhqkBp707Bcit0x0XnxB97PXkMM8np3TMyCLKJXTA-Mbgpf2hKY6pxX05vkZESoFqQ2Myn1toHhlBt9_Vs1hnzsQZ9XQGJYaFKOv0iZs/s1600/IMG_20180708_144203.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPDxKmA8DdqQF_ojjn8QEN4heDZ54ktNPh15NGhqkBp707Bcit0x0XnxB97PXkMM8np3TMyCLKJXTA-Mbgpf2hKY6pxX05vkZESoFqQ2Myn1toHhlBt9_Vs1hnzsQZ9XQGJYaFKOv0iZs/s400/IMG_20180708_144203.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYHpJWrmsRmNHATaBieUy1onH_GJyj447xVxUiYikjQzHsLoPdkNuEWC95JzpVYu0Xi8yBHg2re2zUip6rPKhf90xfDP_vUOPRYckUAh8_tTUQRpyZxJbrLCzN7Fu7duRc7bx2FlwjWGg/s1600/IMG_20180708_144125.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYHpJWrmsRmNHATaBieUy1onH_GJyj447xVxUiYikjQzHsLoPdkNuEWC95JzpVYu0Xi8yBHg2re2zUip6rPKhf90xfDP_vUOPRYckUAh8_tTUQRpyZxJbrLCzN7Fu7duRc7bx2FlwjWGg/s400/IMG_20180708_144125.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi33btV-JYEFVVFtbIc7mNnrxyTv60-3oQkfea0XXSgWjpNvUh53xO2L8_BZR-GIZEmQp34O0h1DH0jG02S1lsNeS_KBi-yiHGvj4ENsPmeSalRXwUC7YyALYqC6Uo4dJS1L3s52YrfckQ/s1600/IMG_20180704_121409_212.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1295" data-original-width="1600" height="322" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi33btV-JYEFVVFtbIc7mNnrxyTv60-3oQkfea0XXSgWjpNvUh53xO2L8_BZR-GIZEmQp34O0h1DH0jG02S1lsNeS_KBi-yiHGvj4ENsPmeSalRXwUC7YyALYqC6Uo4dJS1L3s52YrfckQ/s400/IMG_20180704_121409_212.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjpXgGxRXuPxQhMxJyP837SxgQHMGp-2GMbGxRyfOOiqo2y53EAS2ACK1A2to6ZNB8_cCb8qkei5cToVsFrg6nhQh0PiqAwaZqpDeszOYRD96wq12gjZIXtdx7vfYEicp2_Co_2WN2Y8U/s1600/MVIMG_20180701_190927.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjpXgGxRXuPxQhMxJyP837SxgQHMGp-2GMbGxRyfOOiqo2y53EAS2ACK1A2to6ZNB8_cCb8qkei5cToVsFrg6nhQh0PiqAwaZqpDeszOYRD96wq12gjZIXtdx7vfYEicp2_Co_2WN2Y8U/s400/MVIMG_20180701_190927.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjecSk8PSlT3bgAiPLr60GOGGpzNYISjdmTiQayWj4D7ivmhp-I4-bEbnryPlRNAGMjW6lANDEC1b0kr-NoZDwTX6rQqDZyytoJNY0xdNUpk9ehwdhL7AEBvUCbl4V09eJR1-Rwbc74h90/s1600/IMG_20180628_194950.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjecSk8PSlT3bgAiPLr60GOGGpzNYISjdmTiQayWj4D7ivmhp-I4-bEbnryPlRNAGMjW6lANDEC1b0kr-NoZDwTX6rQqDZyytoJNY0xdNUpk9ehwdhL7AEBvUCbl4V09eJR1-Rwbc74h90/s400/IMG_20180628_194950.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwqcCiwHLq-69b2miB6jSyXqOiDN-Zj1zIkGN5WU2A-XFVRgjINn1Ulk6nRJW204oIxoDI840EPTZv7BJeZyBNgpdhzkgGK31VjK7DE6CArTRS_0fq50N0AEcFa5aM1y8fkWOpWWZsJoU/s1600/IMG_20180628_074707_790.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1001" data-original-width="1001" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwqcCiwHLq-69b2miB6jSyXqOiDN-Zj1zIkGN5WU2A-XFVRgjINn1Ulk6nRJW204oIxoDI840EPTZv7BJeZyBNgpdhzkgGK31VjK7DE6CArTRS_0fq50N0AEcFa5aM1y8fkWOpWWZsJoU/s400/IMG_20180628_074707_790.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjft5xrmQZaYEoVvZPxeWgfPd6PgSQg_-RapBkbNli__ZLsXpwaCBh-JkRJ3uO5DLaDCrxF_OjK0RAxc8aFQebfOosgeX3Xo8g242u4Z3LKf1JcYTy-ejJU48GtD6PYGyndibO3RAVhnQY/s1600/MVIMG_20180627_085946.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjft5xrmQZaYEoVvZPxeWgfPd6PgSQg_-RapBkbNli__ZLsXpwaCBh-JkRJ3uO5DLaDCrxF_OjK0RAxc8aFQebfOosgeX3Xo8g242u4Z3LKf1JcYTy-ejJU48GtD6PYGyndibO3RAVhnQY/s400/MVIMG_20180627_085946.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-KQS7jUMLcK-Ntuj7XehA1KTrsecorbVj48tjyHogwscZJwwFIx90oqRr36rldicL3qUDUj0GbMihTd0bZDQ1ZB0ORLIB3wf9m5K1jo6znECdw6yQgFnMmKGNLa42IeIhjzuV1yt3giI/s1600/MVIMG_20180626_140120.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-KQS7jUMLcK-Ntuj7XehA1KTrsecorbVj48tjyHogwscZJwwFIx90oqRr36rldicL3qUDUj0GbMihTd0bZDQ1ZB0ORLIB3wf9m5K1jo6znECdw6yQgFnMmKGNLa42IeIhjzuV1yt3giI/s400/MVIMG_20180626_140120.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgVof2018Sf07CtvYb9EayqRr7846_4YZGhorrZUKbnjD36BHQ07NbgsAPEm8h7UWLyEwNi9wkzjLkR_r9G00YmIarUrY4LuChSY5CbOP4ETqGN3oqM7va9Y6lSV1dHXhapwbUQFpNY64/s1600/FB_IMG_1529292638965.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="961" data-original-width="1438" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgVof2018Sf07CtvYb9EayqRr7846_4YZGhorrZUKbnjD36BHQ07NbgsAPEm8h7UWLyEwNi9wkzjLkR_r9G00YmIarUrY4LuChSY5CbOP4ETqGN3oqM7va9Y6lSV1dHXhapwbUQFpNY64/s400/FB_IMG_1529292638965.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo97feAMCtTj9wu4-n5JZ4nlhLMDZ90gNYVME5d-pXPrI0AjdskdHugGbrMadFKYuGDmcbz5H60Re_R0L6EV-OYzZtoCZrwH6IxYGJHe7TU-N8OzyMTzblg5m5NvnQVr8cHmevYzBETdo/s1600/IMG_20180608_182308.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo97feAMCtTj9wu4-n5JZ4nlhLMDZ90gNYVME5d-pXPrI0AjdskdHugGbrMadFKYuGDmcbz5H60Re_R0L6EV-OYzZtoCZrwH6IxYGJHe7TU-N8OzyMTzblg5m5NvnQVr8cHmevYzBETdo/s400/IMG_20180608_182308.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhciYGYub3_2yHpkZHELNIWbk5czmZalQ_H05HEQy5fIhJVpvTVVhEqcpwZ0q0h1Ah8KJeMH8n4d6IAqf2T0Dei9wlJos_ir-fPH4M5fZ6Cni2hyphenhyphenUqHIbHaf9hhcsji4XUaNRj6EAMYUGc/s1600/MVIMG_20180528_123738.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhciYGYub3_2yHpkZHELNIWbk5czmZalQ_H05HEQy5fIhJVpvTVVhEqcpwZ0q0h1Ah8KJeMH8n4d6IAqf2T0Dei9wlJos_ir-fPH4M5fZ6Cni2hyphenhyphenUqHIbHaf9hhcsji4XUaNRj6EAMYUGc/s400/MVIMG_20180528_123738.jpg" width="400" /></a></div>
<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-43313876018484664192018-03-18T11:10:00.002-07:002018-03-18T11:10:15.757-07:00A #FightingForMaya Update: How to Eat a Whale.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVjkORcrRHMXfnEuTdCFMwqy9Wg2u1E6fJunyZjbHfQ4iGnWB18rCnOFkhG8Wfz1sbGbJ3HQ7S7lbx14NwoHsAiRXvmqHy3UROjh_dm56S8ARfImYgIPWLlubN21Th7IlW0JSPso-JAUM/s1600/20120526_090021.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVjkORcrRHMXfnEuTdCFMwqy9Wg2u1E6fJunyZjbHfQ4iGnWB18rCnOFkhG8Wfz1sbGbJ3HQ7S7lbx14NwoHsAiRXvmqHy3UROjh_dm56S8ARfImYgIPWLlubN21Th7IlW0JSPso-JAUM/s400/20120526_090021.jpg" width="400" /></a></div>
<br />
For our family, February was a very busy month. I settled into a new job. The household went into full relocation mode with selling our Ocean Beach house and working to locate a new house in L.A. Of course, this means lots of busy days and nights. Emotionally, its hard to say goodbye, but also exciting to start anew.<br />
<br />
In the midst of it all, I took a brief trip to Copenhagen, Denmark. I was invited to participate in a symposium that was exploring the various phenotypes of Maya's disorder. I presented on the families' perspective.<br />
<br />
It really doesn't capture it to say that I was both "honored" to represent the families that we have met along this journey and "emotionally overcome" by the sheer magnitude of our five year journey from diagnosis to that meeting in Copenhagen. It is impossible to describe how I felt sitting in that conference room in that far off city for two and half days, while doctors and professionals from around the world discussed the disorder. The English language does not have words to describe how lonely and lost we were when Maya was first diagnosed. Yet, here I was in this room as professionals explored the disorder and how best to support, treat and one day cure those impacted.<br />
<br />
I'm often asked, what will come out of the Copenhagen meeting. Its almost as if people are expecting that I would be handed the magic white pill at the end of the meeting. The pill that will cure it all and rewind things to that day when Maya could run and jump and sing. Perhaps, that is what I secretly wanted.<br />
<br />
In the end, the meeting was a step in the right direction. One bite of the whale...<br />
<br />
<u>Melinda Mae</u><br />
by Shel Silverstein<br />
<br />
<div class="MsoNormal">
Have you heard of tiny Melinda Mae,<o:p></o:p></div>
<div class="MsoNormal">
Who ate a monstrous whale?<o:p></o:p></div>
<div class="MsoNormal">
She thought she could,<o:p></o:p></div>
<div class="MsoNormal">
She said she would,<o:p></o:p></div>
<div class="MsoNormal">
So she started in right at the tail.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And everyone said, “You’re much too small,”<o:p></o:p></div>
<div class="MsoNormal">
But that didn’t bother Melinda at all.<o:p></o:p></div>
<div class="MsoNormal">
She took little bites and she chewed very slow,<o:p></o:p></div>
<div class="MsoNormal">
Just like a good girl should…</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
…And in eighty-nine years she ate that whale<o:p></o:p></div>
<div class="MsoNormal">
Because she said she would!<o:p></o:p></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxQ2Z-vI0r1B48j8isoDnJgdJR50dPhbEtzP1bQ5JPsy4QVWuZr6LlbCtceZcX-DSCguBihcqJTYnooHGbH2g' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-66319715165860332832018-01-23T17:01:00.000-08:002018-01-23T17:14:13.704-08:00A #FightingForMaya Update: What if you had to? <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo2C3ITE5kEcPFo0SWSYfMHM2hmZoDk-vboWJ5l5m_VO4jWGxsF_J9yq_kir2KspKXkjhqHcEEVTu006NeNJ92ykwDdnKR2kbH4ABXNz3nWgM9BchQqOHU60tyF7YTYFzKCPEgK1YUuek/s1600/DSC_0617.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="420" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo2C3ITE5kEcPFo0SWSYfMHM2hmZoDk-vboWJ5l5m_VO4jWGxsF_J9yq_kir2KspKXkjhqHcEEVTu006NeNJ92ykwDdnKR2kbH4ABXNz3nWgM9BchQqOHU60tyF7YTYFzKCPEgK1YUuek/s640/DSC_0617.jpg" width="640" /></span></a></div>
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Several months ago, I awoke in the middle of the night. I wasn't really startled, but I just woke up and couldn't fall back asleep. Like too many of us, I immediately reached for my phone and checked if I had missed anything during the last few hours of slumber.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">As some point, I realized that a friend (another rare disease dad) was awake and online. Perhaps I was intruding, but I pinged him and asked how things were going. After a few rounds of back and forth, I asked why he was up (he is a couple of hours ahead of us). To my surprise he answered with painful honesty... he was wondering if he had done enough. Had he missed anything in his pursuit to save his children.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">It was brutal. It was honest. It is a common struggle within the rare disease community.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">*****</span><br />
<div>
<span style="font-family: inherit;"><br /></span></div>
<span style="font-family: inherit;">There really isn't a rare disease playbook. No one person or organization has the answers. The list of things that can or must be done is simply overwhelming. I've found that most parents pick one or two areas of expertise (e.g., legislation, research, fundraising or caring for their child) and drive hard in that particular direction.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">In the face of overwhelming odds, it seems to be the best possible answer.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">****</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Last week, I had the absolute pleasure of visiting <a href="https://www.agility-clinical.com/" target="_blank">Agility Clinical</a> and sharing Maya's story. Our friend's sister works at Agility and she has followed Maya's story over the last couple of years. When Agility scheduled their 2018 All Hands Meeting, she asked if I would be interested in sharing a bit more about our family's story.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Agility Clinical is focused on the rare disease community and <span style="background-color: white; color: #0a0a0a;">provides full clinical trial services from study design through to regulatory submission for marketing approval. They are good people.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #0a0a0a;"><br /></span>
</span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #0a0a0a;">Below are a couple of pictures from the talk. Thank you Laurie, Agility Clinical and Mark for helping us share our story.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #0a0a0a;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: white; color: #0a0a0a;">**** </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #0a0a0a;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: white; color: #0a0a0a;">The question I receive most often is "How is Maya?"</span><span style="background-color: white; color: #0a0a0a;">Its a tough question to answer, but she is doing well. Without treatment, we believe that Maya's gains would be non existent and her progression would be far worse. Although we don't have a cure, we do feel that we have bought more time.</span><span style="background-color: white; color: #0a0a0a;">Maya works very hard everyday to improve her walking and balance. She can't walk independently and depends on a wheelchair to cover long distances. However, she shows such conviction and drive to regain the ability to stand and walk. It is inspiring.</span></span><br />
<br />
<span style="background-color: white; color: #0a0a0a; font-family: inherit;">******</span><br />
<span style="background-color: white; color: #0a0a0a; font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">"What if you had to?" is something that my favorite spin instructor asks of the class at those most critical of moments. Those moments when 99% of your body and mind says give up and only 1% is pushing you forward.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Each day we are fortunate enough to witness Maya and so many other Rare Disease patients and families answer the question... What if you had to?</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Thank you for your continued love and support.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">#FightingForMaya</span><br />
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0Sxq96g72CLFbR745nPNKa_mD63C3vYqJOH3nd9jXAxcOyOHpxkRYT_1WqHVJHayPDXBJB4ZTPalTb_c3Ebb4M0mV87zf1OZ1yseOy4dsgqbK47W9HPL2O0PVQAXFA94oNEuLJp8U6E/s1600/DSC_0489.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0Sxq96g72CLFbR745nPNKa_mD63C3vYqJOH3nd9jXAxcOyOHpxkRYT_1WqHVJHayPDXBJB4ZTPalTb_c3Ebb4M0mV87zf1OZ1yseOy4dsgqbK47W9HPL2O0PVQAXFA94oNEuLJp8U6E/s400/DSC_0489.jpg" width="400" /></span></a></div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgf66q7x57WenI2LLT64dWY88F30VbZ9rs_dExUOmKenumtTj1yMB7A7w3arAIZIwfOdRMkMGIqDJ1G4CYO6l5fa3eC1olW3h5EKe4jOpwe5TGECZNW_8nO2oYls0oyCXqX6f9_yLa8h0/s1600/DSC_0491.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgf66q7x57WenI2LLT64dWY88F30VbZ9rs_dExUOmKenumtTj1yMB7A7w3arAIZIwfOdRMkMGIqDJ1G4CYO6l5fa3eC1olW3h5EKe4jOpwe5TGECZNW_8nO2oYls0oyCXqX6f9_yLa8h0/s400/DSC_0491.jpg" width="400" /></span></a></div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh2RFNPI3yL7EaQX5hqSBeZwtYvJm9lIqG-PrMzx_ThDR-HaEy3rRWVkjWeW8cPqjZBQ_XIw3T48FkmZ86Mb-4jpSUaC4c1xJALPNVX36dYEY_8tuXb9JEpGe8tfjTddTAV6d_YtGPCAI/s1600/DSC_0493.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh2RFNPI3yL7EaQX5hqSBeZwtYvJm9lIqG-PrMzx_ThDR-HaEy3rRWVkjWeW8cPqjZBQ_XIw3T48FkmZ86Mb-4jpSUaC4c1xJALPNVX36dYEY_8tuXb9JEpGe8tfjTddTAV6d_YtGPCAI/s400/DSC_0493.jpg" width="400" /></span></a></div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-saTPHmQ36JiQvlz3YFKrsn4zIpyhrCl8SRGnf06eajj9P2kAFKozIwLYRGwzQnLzUraFfP4OBKh6ZHduAuYpf7MmhxwTB63AdElFmsrwSm6AWNIham2A35VGZjV23LoalqWZ-52QS5s/s1600/DSC_0532.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-saTPHmQ36JiQvlz3YFKrsn4zIpyhrCl8SRGnf06eajj9P2kAFKozIwLYRGwzQnLzUraFfP4OBKh6ZHduAuYpf7MmhxwTB63AdElFmsrwSm6AWNIham2A35VGZjV23LoalqWZ-52QS5s/s400/DSC_0532.jpg" width="400" /></span></a></div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn7DTH7sVMx9idKDl_x_gPbFCndh14MQ8tIJZb9QrkJV3mgMLwoFixOlpg_iw3bba7JEbAoZemKBoCtlJphmxdV5BvscKrV05yWVzoiDyaGc6jr1mo85ZGh61bZqSk8KpfIdFIqYViZGE/s1600/DSC_0573.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn7DTH7sVMx9idKDl_x_gPbFCndh14MQ8tIJZb9QrkJV3mgMLwoFixOlpg_iw3bba7JEbAoZemKBoCtlJphmxdV5BvscKrV05yWVzoiDyaGc6jr1mo85ZGh61bZqSk8KpfIdFIqYViZGE/s400/DSC_0573.jpg" width="400" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg890gnbl2yKRHhp2L3G7hfLJib38C96uDjOW3zw1zWbZukYpIt7bFn7qpUomFrMygHgNl8VcZAdRN-z64xmZeWcM8dbo9dHOdVlBUQAeBMHmuvJRdOhaFXB-76yzVibvW-Ac0IwYaMTFs/s1600/DSC_0581.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1060" data-original-width="1600" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg890gnbl2yKRHhp2L3G7hfLJib38C96uDjOW3zw1zWbZukYpIt7bFn7qpUomFrMygHgNl8VcZAdRN-z64xmZeWcM8dbo9dHOdVlBUQAeBMHmuvJRdOhaFXB-76yzVibvW-Ac0IwYaMTFs/s400/DSC_0581.jpg" width="400" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfaGKWPlZEbdmtj1RgA_o8PPB0zupm4Bxb_g-1SWRRr8mTaxCsnjxc15ErVucFpYh9I4HSQu_e3DhYAU20klhopnbro1W6fFbWlC8dQihi_ymPm9JucdVhmgDUd3TgMfwnr-j2_5EVjwg/s1600/IMG_20180114_162401.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfaGKWPlZEbdmtj1RgA_o8PPB0zupm4Bxb_g-1SWRRr8mTaxCsnjxc15ErVucFpYh9I4HSQu_e3DhYAU20klhopnbro1W6fFbWlC8dQihi_ymPm9JucdVhmgDUd3TgMfwnr-j2_5EVjwg/s400/IMG_20180114_162401.jpg" width="300" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUn4w9aOvbljK80cUUVzyzf1CotfWYibKOfH-CNTyAxEPZVJF9SUfazcqnsI8uMrbT2bmJTvqmV5s3uMULiCc6OQISnC-Guczr5_mZcYRzzSOkyRVP1od5YXDqscuYuVWuPQgk3v8PP5g/s1600/IMG_20171218_144129.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUn4w9aOvbljK80cUUVzyzf1CotfWYibKOfH-CNTyAxEPZVJF9SUfazcqnsI8uMrbT2bmJTvqmV5s3uMULiCc6OQISnC-Guczr5_mZcYRzzSOkyRVP1od5YXDqscuYuVWuPQgk3v8PP5g/s400/IMG_20171218_144129.jpg" width="400" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-44890364860714055952017-11-19T15:06:00.000-08:002017-11-19T15:06:20.138-08:00A #FightingForMaya Update<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieg5UABVI0kJNuoVP4CaM-Y80NKCswQ7WKSLcPxMdQ2TL5TV8MFOW5MNCEuLRjYbuuU1coMoACeDkndNmEVmNXHbIm5SuQ9FI3ip3TdD2N5DRFp25zfpnCPA5VcE2icH1WwZaZlec5TSY/s1600/IMG_20170628_202140.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieg5UABVI0kJNuoVP4CaM-Y80NKCswQ7WKSLcPxMdQ2TL5TV8MFOW5MNCEuLRjYbuuU1coMoACeDkndNmEVmNXHbIm5SuQ9FI3ip3TdD2N5DRFp25zfpnCPA5VcE2icH1WwZaZlec5TSY/s640/IMG_20170628_202140.jpg" width="480" /></a></div>
<br />
<br />
<br />
<br />
There we sat. It had been at least seven years. He had asked for the meeting and said that I could move it if I was too busy. <br />
<br />
I didn't. <br />
<br />
We exchanged pleasantries...<br />
<br />
"What division are you in?" <br />
<br />
"Remember the old days?"<br />
<br />
"What are you working on?"<br />
<br />
We only had thirty minutes and I couldn't figure out why he had asked for the meeting. I couldn't figure out what obscure project required my assistance.<br />
<br />
Then he said it... "His daughter had been recently diagnosed with a rare disease." It hit me like a bomb... why hadn't I seen the signs. Would I ever see the signs?<br />
<br />
I got up, and against his objections, I asked my assistant to clear my calendar.<br />
<br />
His wife had read about Maya and insisted that he come and speak with me. <br />
<br />
I got it. <br />
<br />
I remember the fear, the burden... How could I (a successful adult) ask for help?<br />
<br />
I did my best to channel those who listened to Maya's story... those who supported and helped when Maya was first diagnosed and I listened and did my best to share what we had learned during our own journey.<br />
<br />
It wasn't the first time and it won't be the last. <br />
<br />
That is my promise to Maya.<br />
<br />
******<br />
<br />
Our family has been very quiet for the last couple of months. Sort of in hibernation. Really just trying process the last year and to re-establish who we are as a unit.<br />
<br />
As those Facebook memories come across our feeds, reminding us of all that we as a family endured, only during those moments, do we fully comprehend what it took to get Maya access to treatment, traveling thousands of mile, every two weeks, to a far off city. <br />
<br />
I recently took a look at our calendar from October 2016, and I remembered printing a copy for each of the boys and telling them that "Either mommy or I would be back for birthdays, soccer games and other important events, but grandma and grandpa would be with them during the week."<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu_Htp0k_wjqVJGFUpcHJZcz-iBFPdXtOpNTK1l53tMLbqYcwWaRf07Q418dRNd71SJ4eBuUPkiJOEiGaKJ10IxHi8NVuxkdy3OO6ve7jEcpH0GiCQI55HFQHju0GZFJp5qD65tmZIIog/s1600/Screenshot_20171119-134334.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu_Htp0k_wjqVJGFUpcHJZcz-iBFPdXtOpNTK1l53tMLbqYcwWaRf07Q418dRNd71SJ4eBuUPkiJOEiGaKJ10IxHi8NVuxkdy3OO6ve7jEcpH0GiCQI55HFQHju0GZFJp5qD65tmZIIog/s320/Screenshot_20171119-134334.png" width="180" /></a></div>
<br />
<br />
<br />
I remember thinking that if we made it through this journey, that the boys would be stronger and this push (to save their sister's life), by their family and their community, would forever provide them with the strength to accomplish anything. IT HAS!!!<br />
<br />
There is a lot that we as a family have to do to repair the sacrifice of the past year, but we're going to be okay. We are going to be way more than okay!<br />
<br />
*****<br />
<br />
A couple of Fridays ago, I sat across from Maya's doctor and asked if we could review Maya's old videos. Those videos of her walking and talking when we first started at CHOC. I'd recently been faced with a bunch of questions,<br />
<br />
"How is Maya?"<br />
<br />
"Is it working?"<br />
<br />
To his credit, Maya's doctor reminded me of that month when Maya came off of treatment, due to an infection. <br />
<br />
"Remember how she stooped as she walked?" <br />
<br />
"Remember how much you had to support her as she walked?"<br />
<br />
"You know the science.... every infusion is a success... every day without regression is a really good day."<br />
<br />
<br />
*****<br />
<br />
<b><u>How can you help?</u></b><br />
<b><u><br /></u></b>
When we started, Maya was the 8th reported case with this form of Batten Disease. Today, I know of well over 30 people who have received this specific diagnosis. Some estimates say that the number is well over 100. We have come a long way, but there is still more to do.<br />
<b><u><br /></u></b>
1. If you are able, please make a donation to the research project at Texas Children's Hospital. This program is studying Maya's specific form of this disorder (as well as the classic form). The moonshot of this project is a less invasive, less risky treatment for those who are dealing with this disorder. <a href="http://waystogive.texaschildrens.org/scar7" target="_blank">http://waystogive.texaschildrens.org/scar7</a>. To date, we have raised $120,000 of the necessary $200,000 for this four year research project.<br />
<br />
2. At least once, between today and the end of the year, put on your #FightingForMaya shirt, take a selfie and share Maya's story. This one small act could make all of the difference for one family...<b> it could be the reason for my next meeting.</b><br />
<br />
Happy Holidays and thank you for your continued Love and Support.<br />
<br />
#FightingForMaya<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgsQG7XqkPHQ7HmO4bxA_R4pzMpFpqkZBunexUjy4JdXs2qk_SY-dXcG2zWFKlJsIiVHGn0QDErvkiS_EfsUeNm7YuL21YbKkr0xettbG5k7cFi-i6GE9Ot3niTWqFL7RZVSXeoV0uC_s/s1600/FB_IMG_1496804047994.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgsQG7XqkPHQ7HmO4bxA_R4pzMpFpqkZBunexUjy4JdXs2qk_SY-dXcG2zWFKlJsIiVHGn0QDErvkiS_EfsUeNm7YuL21YbKkr0xettbG5k7cFi-i6GE9Ot3niTWqFL7RZVSXeoV0uC_s/s320/FB_IMG_1496804047994.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK4YrO_ZANawbWEQoOH_cPaivFaH1PBVxMzt193Sc3BMGzRnxSHTzLUpz1cH6hc6gSUfjUJz3hQHzpGTdsNymVMpA0sna2GEXgZApEOY_tpeyTyyGjsz2EM4WcgSjDACP5D0jZ0nOyLqE/s1600/IMG_20170729_144045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK4YrO_ZANawbWEQoOH_cPaivFaH1PBVxMzt193Sc3BMGzRnxSHTzLUpz1cH6hc6gSUfjUJz3hQHzpGTdsNymVMpA0sna2GEXgZApEOY_tpeyTyyGjsz2EM4WcgSjDACP5D0jZ0nOyLqE/s320/IMG_20170729_144045.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6-AlTgAkGfNSti4BK8zIdJ8RRNo4fhsMdMhdNeMyANRSmf9Y4VrVlvMWIejNgoYgVEgREXikg8EGxzVlchFjCBeL75znn-XqY4drqybsbEpCL5KP7IfcV2Wosq3FHQ6EDl_vAOaMqMjI/s1600/IMG_20170805_160725.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6-AlTgAkGfNSti4BK8zIdJ8RRNo4fhsMdMhdNeMyANRSmf9Y4VrVlvMWIejNgoYgVEgREXikg8EGxzVlchFjCBeL75znn-XqY4drqybsbEpCL5KP7IfcV2Wosq3FHQ6EDl_vAOaMqMjI/s320/IMG_20170805_160725.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfAz0qZUu40cHGw1SbfqapcVyYW8NaDC3a9FLXZI4yzJgZreJbKgStH41roXOqXKbK57oWjJHHzNdLfUGK5XBEDXcyWi55pO_amwnigtcrxy1mQl1iugn2ykuyJAzExAron5Lt05lmOBQ/s1600/IMG_20170819_160524.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfAz0qZUu40cHGw1SbfqapcVyYW8NaDC3a9FLXZI4yzJgZreJbKgStH41roXOqXKbK57oWjJHHzNdLfUGK5XBEDXcyWi55pO_amwnigtcrxy1mQl1iugn2ykuyJAzExAron5Lt05lmOBQ/s320/IMG_20170819_160524.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUVa9rx3WE6VI2RWds1V_J4UX1qCK8NaFzmzunmXUdx35rJKBrRM8WRqVqH47OK3VpIvszyNjF77MeOCxrPzuMYunCmtIww2HwjXfHL8WtoyL5ocWlIyk1um3OjyfPNhVIHZp7Y9OGHtE/s1600/IMG_20170820_062451.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUVa9rx3WE6VI2RWds1V_J4UX1qCK8NaFzmzunmXUdx35rJKBrRM8WRqVqH47OK3VpIvszyNjF77MeOCxrPzuMYunCmtIww2HwjXfHL8WtoyL5ocWlIyk1um3OjyfPNhVIHZp7Y9OGHtE/s320/IMG_20170820_062451.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglvTaJgkpkx8Ic9xVciftYuQ1Ty7sqEjodH9hxuGamG4HaKCTV6RbCx_thUj8NepZF44W00-c27oFcLwd7Mu8qtFKHmX6HIsUsZK0uPOkvkoN7QAyFlaPjLj4AMA7tMot3ivyk2UIt6ZU/s1600/IMG_20170828_071514.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglvTaJgkpkx8Ic9xVciftYuQ1Ty7sqEjodH9hxuGamG4HaKCTV6RbCx_thUj8NepZF44W00-c27oFcLwd7Mu8qtFKHmX6HIsUsZK0uPOkvkoN7QAyFlaPjLj4AMA7tMot3ivyk2UIt6ZU/s320/IMG_20170828_071514.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsC4rVb3uOaDSsYEcVXX7xGyKnDZRfEwBRF6ZlAN1UsuVPDnAWxOX50pIfKvwdJJHNngSr_wXVb6BVWjYkoF450S-iS2JLIuotM2Fd6QtR5WlDBEzjZDO_N-S6hNePkd-NGNJsMT6v-WY/s1600/IMG_20170730_162524.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsC4rVb3uOaDSsYEcVXX7xGyKnDZRfEwBRF6ZlAN1UsuVPDnAWxOX50pIfKvwdJJHNngSr_wXVb6BVWjYkoF450S-iS2JLIuotM2Fd6QtR5WlDBEzjZDO_N-S6hNePkd-NGNJsMT6v-WY/s320/IMG_20170730_162524.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOcvSMftZ6h2q30qUWFS67HQNL2xV9zKf866Usz0Ox0hAq72Fan3glFviJPk1sOzCbZB8lns38S4SSrSIZiA01-Gmuy6QpGUeg70pjC8zcu9YyPxUns05dx0WuBZjE9PtcFvNL6UIzl0/s1600/IMG_20170803_111132_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOcvSMftZ6h2q30qUWFS67HQNL2xV9zKf866Usz0Ox0hAq72Fan3glFviJPk1sOzCbZB8lns38S4SSrSIZiA01-Gmuy6QpGUeg70pjC8zcu9YyPxUns05dx0WuBZjE9PtcFvNL6UIzl0/s320/IMG_20170803_111132_1.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp9ju4e6A5gGMcxjoBQRGa_oydIrsk0NxwL9Q_kQO4_2Oo_BnvR8M3fB8RO2PznR9L9c4nfKUlIDTy6239e9embHHqiydOQGIJGKs1c_L35XnbUaPHmKxo8UhKsoiXJr1QSfFS-i3bc5A/s1600/IMG_20170807_164445.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp9ju4e6A5gGMcxjoBQRGa_oydIrsk0NxwL9Q_kQO4_2Oo_BnvR8M3fB8RO2PznR9L9c4nfKUlIDTy6239e9embHHqiydOQGIJGKs1c_L35XnbUaPHmKxo8UhKsoiXJr1QSfFS-i3bc5A/s320/IMG_20170807_164445.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4h8Aawf7IjzSuU5xnLcOINtxewutHL9K_jaFc4VVRN9-SU-6bIoQOQsg_nUSUnMAwdeHgRHXmjvUzdTAmUzgMFoNvAzh_GiVox7J0zxUIaAaBWeIC0eaI0zXwTV4XAlHNrIUilVGjjPY/s1600/FB_IMG_1496727796132.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="961" data-original-width="1438" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4h8Aawf7IjzSuU5xnLcOINtxewutHL9K_jaFc4VVRN9-SU-6bIoQOQsg_nUSUnMAwdeHgRHXmjvUzdTAmUzgMFoNvAzh_GiVox7J0zxUIaAaBWeIC0eaI0zXwTV4XAlHNrIUilVGjjPY/s320/FB_IMG_1496727796132.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheEVEjyKG8ozbbS8Gq1abr9XWqrsHx-l_CMHNhVcI0OAPfTOB3RNwPDGK0-__B5mtxhkwGoyCfDqIOYGUq8NWrCXEPS3dtfX0jpIUlqvvZRtypLJxsaS5sk1Odje4r8GAp5Sqf_w-PRC4/s1600/FB_IMG_1496727888315.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1323" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheEVEjyKG8ozbbS8Gq1abr9XWqrsHx-l_CMHNhVcI0OAPfTOB3RNwPDGK0-__B5mtxhkwGoyCfDqIOYGUq8NWrCXEPS3dtfX0jpIUlqvvZRtypLJxsaS5sk1Odje4r8GAp5Sqf_w-PRC4/s320/FB_IMG_1496727888315.jpg" width="264" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0QNoOwnu83Aqc9U9q8FI-nGEs3KRbylpBJYP0_nw5uEsiy2GjY-8_cMmMyf4p4nWMpm2iu1fuJfxI9Q4PnpOHPUEbhWtYMEeXgs0ewcdPTBG1GfdYfK-0YjW7w5MYWoIDMkj84ig0-9A/s1600/IMG_20170628_194604.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0QNoOwnu83Aqc9U9q8FI-nGEs3KRbylpBJYP0_nw5uEsiy2GjY-8_cMmMyf4p4nWMpm2iu1fuJfxI9Q4PnpOHPUEbhWtYMEeXgs0ewcdPTBG1GfdYfK-0YjW7w5MYWoIDMkj84ig0-9A/s320/IMG_20170628_194604.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS3IK_ig5BZS1UaylYLo-rBm_LKOrkFRe16h_uGFJ_pUnWQDOirLy2ACnDfBs5RkwBtfkH2690wVgtzRfYoXLEbAD8D__FsAcH8ObAzJipW6vAAJR3aCCzML1bx-y9KIpRdcykJF0kucM/s1600/IMG_20170628_194617.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS3IK_ig5BZS1UaylYLo-rBm_LKOrkFRe16h_uGFJ_pUnWQDOirLy2ACnDfBs5RkwBtfkH2690wVgtzRfYoXLEbAD8D__FsAcH8ObAzJipW6vAAJR3aCCzML1bx-y9KIpRdcykJF0kucM/s320/IMG_20170628_194617.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvWs9SFfMr559TbWfoU4VCjSCVoHNLLGafYB8OWQKGCBUDRAbvKVd8qX1Zr8TN6zbQC7dsf81hCAsrAV63Yvl9r5Yv_ri4MOXig-g5hZdu0LU-76hO3TnNhyphenhyphenDbzHCYrsD3ktUuAgN7E1A/s1600/IMG_20170812_163123.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvWs9SFfMr559TbWfoU4VCjSCVoHNLLGafYB8OWQKGCBUDRAbvKVd8qX1Zr8TN6zbQC7dsf81hCAsrAV63Yvl9r5Yv_ri4MOXig-g5hZdu0LU-76hO3TnNhyphenhyphenDbzHCYrsD3ktUuAgN7E1A/s320/IMG_20170812_163123.jpg" width="240" /></a></div>
<br />
<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com2tag:blogger.com,1999:blog-2824559967983244468.post-71738564549423681292017-08-12T13:45:00.000-07:002017-08-12T14:42:06.934-07:00A #FightingForMaya Update: Celebrate the Small Stuff<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQvCH3GOaDkuTCwRmQcDs5I-HkC9bWPTQhQ5SLH_GhDvPRNcJryfXFLa3DbCjLZffeTSM2GdZG0lcfe9qWuWmhogMpPx5Z0rD1HJ4mZfN1N25ZSBKIE4_MIy6DbnsDBWT-E5CcfxOpYcU/s1600/IMG_20170811_182747.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQvCH3GOaDkuTCwRmQcDs5I-HkC9bWPTQhQ5SLH_GhDvPRNcJryfXFLa3DbCjLZffeTSM2GdZG0lcfe9qWuWmhogMpPx5Z0rD1HJ4mZfN1N25ZSBKIE4_MIy6DbnsDBWT-E5CcfxOpYcU/s400/IMG_20170811_182747.jpg" width="300" /></a></div>
<br />
So it has been a bit of an intense week. On Friday, we celebrated Maya's 22nd infusion. I know, 22 is an interesting number to celebrate, but for our family it has turned out to be a really important number. A number worth celebrating<br />
<br />
You see, yesterday was our first "commercial" infusion. Maya officially, graduated from the compassionate use program for the enzyme replacement therapy and is now receiving replacement enzymes on a commercial basis. "Graduation" means many different things, including, fewer vitals, no more over night stays, insurance pays for the treatment and hopefully less uncertainty. The year leading up to this moment in time has been a grind, but we made it.<br />
<br />
This week, exactly one year ago, our family made our first trip to Columbus, Ohio. We went to Columbus so that Maya could be screened for admittance into the compassionate use program. <br />
<br />
Except for a battery of tests, we really didn't know what to expect of the appointment. For the most part, Maya had a really tough time. She isn't that great with new people and during the appointment, she had to cooperate for at least six doctors, therapists and other new and strange faces. Not a really comfortable position for Maya.<br />
<br />
At the end of the appointment, the doctor asked the million dollar question. "If I call you and admit Maya, when could you be here?" You can read my earlier posts to get a good understanding of how we answered the question.<br />
<br />
Fast forward to today, and Maya's once experimental treatment has received FDA approval, our insurance company has agreed to pay for the treatment and we have transferred to our new hospital, Children's Hospital of Orange County (CHOC), only 90 minutes away from home. Each step to this moment in time, required the efforts of so many people, many sacrifices, so many prayers and so much good luck, but we made it.<br />
<br />
Yesterday, as we were wrapping up Maya's infusion, we sat and spoke with our friends Bekah, Danny and Ely (Maya and Ely have received infusions on the same day since last October and we transferred to CHOC together). Bekah and I discussed the surreal feelings of the day. So much worry, so much stress as our families traversed so many milestones and challenges during the last year. Yet, here we were, wrapping up our infusions, headed home to sleep in our own beds having experienced and accomplished so much in such a short amount of time.<br />
<br />
And so, for dinner last night, we went to Benihana for a post infusion celebration. Not just a celebration for this day, but a thank you to those who helped make this day possible.<br />
<br />
******<br />
<br />
<b><a href="http://www.fightingformaya.com/home.html" target="_blank">#FightingForMaya</a></b><br />
<b><br /></b>
Although things have understandably slowed down with our #FightingForMaya efforts, we continue to work hard to advance this campaign. Most important we continue to support the research project at <a href="http://www.fightingformaya.com/donations--t-shirts.html" target="_blank">Texas Children's Hospital</a> and to try and find others with Maya's specific diagnosis. Despite the fact that the Enzyme Replacement therapy is available, we need to continue to prime the research/treatment/cure pipeline. From a purely scientific perspective, we know that the enzyme replacement therapy will significantly slow the disease's progression and there is a reasonable chance that Maya may regain some functionality. However, we don't know what exactly to expect and the therapy is not a cure. <br />
<br />
We also know that this treatment only addresses the brain, is very invasive and very expensive. We know that down the line other major organs may be impacted and we will need to have several tested, viable treatments available to address future issues in other organs. It is also important to take steps now to provide less expensive treatments so that everyone is able to receive treatment without delay.<br />
<br />
Perhaps, more important, we need to make sure that a cure is available.<br />
<br />
To all of our #FightingForMaya supporters, thank you for helping us achieve so much in such a short period of time.<br />
<br />
In a little more than a year, we have:<br />
<br />
-Raised over $120k of the $200k needed for the research project at Texas Children's Hospital;<br />
-Raised over $15k from sales of #FightingForMaya shirts alone;<br />
-Distributed over 1150 #FightingForMaya shirts; and<br />
-Thousands of #FightingForMaya pictures and videos have been shared on social media.<br />
<br />
The awareness surrounding this campaign has been tremendous. In a little under a year, we have found 4 new families with Maya's form of the disorder. We've also received word, that more researchers are interested in studying Maya's form of the disorder and advancing the overall understanding of the classic and atypical forms of the disorder.<br />
<br />
Each of these accomplishments could have only happened with your support. Thank you.<br />
<br />
****<br />
<br />
Maya is doing well. <br />
<br />
Yesterday was huge for her. For the first time, since last October, Maya was able to sleep in her own bed after an infusion. For Maya, who doesn't sleep well at the hospital, last night was an important milestone.<br />
<br />
Maya continues to work really hard with her walking, speech and strength. She can still only walk with assistance and her speech is slurred, but we continue to see small improvements.<br />
<br />
Maya, as usual, continues to be her amazing self. Inspiring so many people to accomplish so much.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR9ooTcYFrXXuUssDX9Yq6rvEUKwkGsMZQdzFay15FRH9goWT_J1Fhf5ZkOi2_pouTy1-c8qZH8eWqHrLOhwQP2AwGeMj0teucEaucAUu-w_RxvjKdy1N7gyuGRzPw6PHyMii5XrvpRaY/s1600/IMG_20170811_182916.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR9ooTcYFrXXuUssDX9Yq6rvEUKwkGsMZQdzFay15FRH9goWT_J1Fhf5ZkOi2_pouTy1-c8qZH8eWqHrLOhwQP2AwGeMj0teucEaucAUu-w_RxvjKdy1N7gyuGRzPw6PHyMii5XrvpRaY/s400/IMG_20170811_182916.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI7dTzSa0NfPbTA97fUGnMBER53c2fiZ98P2yqc3l9dx-lljDLfsiL_GtqaQHdLtfwTZkaXeSrQHZHRdW3E2FvlBF4K5GPhDEB1LEX5noD7J59ZXCuEQzeofSqnVwSNsGazuPVu8DYGUY/s1600/IMG_20170811_135548.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI7dTzSa0NfPbTA97fUGnMBER53c2fiZ98P2yqc3l9dx-lljDLfsiL_GtqaQHdLtfwTZkaXeSrQHZHRdW3E2FvlBF4K5GPhDEB1LEX5noD7J59ZXCuEQzeofSqnVwSNsGazuPVu8DYGUY/s400/IMG_20170811_135548.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVkpAC673FGbqgCPXgtTClHl1ZHjzjOOSCv-adPn_WIaTgUHO9kSC4gM_uqB29XWmDbrAwyrF2NrOBq_uPGU3RU7TQuZPt-y-KUjGR5qk5xkISo7uQdpjySzF0aN1GXN7VKT-plunqxYM/s1600/IMG_20170811_135537.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVkpAC673FGbqgCPXgtTClHl1ZHjzjOOSCv-adPn_WIaTgUHO9kSC4gM_uqB29XWmDbrAwyrF2NrOBq_uPGU3RU7TQuZPt-y-KUjGR5qk5xkISo7uQdpjySzF0aN1GXN7VKT-plunqxYM/s400/IMG_20170811_135537.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwCOU4XJT4y_YUA5MrQeSYYDMsln9BQc-_MOL_bjL5wgzQSvKoY9xcpOKAAEEPkJPPY3KMGu6rnMmRjfRx4-PAPw-Lk8tQSFM3d0jUndQKz2GTpALhU5uLId8NM47Yl7wj4bOHkcoIKxE/s1600/IMG_20170811_102653.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwCOU4XJT4y_YUA5MrQeSYYDMsln9BQc-_MOL_bjL5wgzQSvKoY9xcpOKAAEEPkJPPY3KMGu6rnMmRjfRx4-PAPw-Lk8tQSFM3d0jUndQKz2GTpALhU5uLId8NM47Yl7wj4bOHkcoIKxE/s400/IMG_20170811_102653.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiej2iRnwhpiWenWGrOz6Ncyq7iNiCuQnx451fkNscsQxbVFNbFFzmRsPXq2C0wz5pE3XpzgJ7DdqwbokoOihMbKUvjsDD5FkeTGY5UlEuL7DY0cqTwPYhJOLM7EDfh9BQIoBcDXv74aJ0/s1600/IMG_20170811_090210.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiej2iRnwhpiWenWGrOz6Ncyq7iNiCuQnx451fkNscsQxbVFNbFFzmRsPXq2C0wz5pE3XpzgJ7DdqwbokoOihMbKUvjsDD5FkeTGY5UlEuL7DY0cqTwPYhJOLM7EDfh9BQIoBcDXv74aJ0/s400/IMG_20170811_090210.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8BL-YiJ0sFRZ_gEuHtJde8DPapXTv5mO2GuRPoXzGll0vnYk7cKpjZhYyQykq_KMDiHfUYYzBjrcyougli2aynsjquHJyXASa2LhenDECc7tANOajyq0HGXPqEfBVr8R3WKJzVGxgU0/s1600/IMG_20170803_175845.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8BL-YiJ0sFRZ_gEuHtJde8DPapXTv5mO2GuRPoXzGll0vnYk7cKpjZhYyQykq_KMDiHfUYYzBjrcyougli2aynsjquHJyXASa2LhenDECc7tANOajyq0HGXPqEfBVr8R3WKJzVGxgU0/s400/IMG_20170803_175845.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiiYwbyojQ-ccyj7ZUXTyvsrhwp5WwO5g5DZmsKLNaYby9MAcF8dbZ5IFtJCUCEwffwkjihav4xfBeejFK6_Hps6tOu_hRi4K4DaiCmj7k4i4iuUtSpAyDCLpXZQ8J0CVMelPcfRlqZAw/s1600/IMG_20170803_095917.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiiYwbyojQ-ccyj7ZUXTyvsrhwp5WwO5g5DZmsKLNaYby9MAcF8dbZ5IFtJCUCEwffwkjihav4xfBeejFK6_Hps6tOu_hRi4K4DaiCmj7k4i4iuUtSpAyDCLpXZQ8J0CVMelPcfRlqZAw/s400/IMG_20170803_095917.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_uIoblq71DamaXj8XkKuk8tDdfvJ76zzDOnCOOmnj6tcn5l4wQVZC37RPg7x3rOAmbrC6qhOZ6jqWEjTANAersTWtBn7Le2eeKgSQ4ZwHjjtK3eG1SnjeIAFTlTXjzXvcD7Rj8sU5jno/s1600/IMG_20170729_144043.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_uIoblq71DamaXj8XkKuk8tDdfvJ76zzDOnCOOmnj6tcn5l4wQVZC37RPg7x3rOAmbrC6qhOZ6jqWEjTANAersTWtBn7Le2eeKgSQ4ZwHjjtK3eG1SnjeIAFTlTXjzXvcD7Rj8sU5jno/s400/IMG_20170729_144043.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXnDGwLw3UJmnlKD8kxLcKUoQOo3h27cfbJCGjRuaJg0AXlEXmWZXPcaed9S2J4X6dI-Zyyz-jLXzcFFcH3_nMEDdcrVprhPchfUmnpeXuF28PyBTcUKkGNdjOhx5Of_EAzkHGTEQygGw/s1600/IMG_20170701_094613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXnDGwLw3UJmnlKD8kxLcKUoQOo3h27cfbJCGjRuaJg0AXlEXmWZXPcaed9S2J4X6dI-Zyyz-jLXzcFFcH3_nMEDdcrVprhPchfUmnpeXuF28PyBTcUKkGNdjOhx5Of_EAzkHGTEQygGw/s400/IMG_20170701_094613.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzwovuLTO5VgojfGnyarRIoS57XFpZVgIuhQrH2gt6euOQ43bLo0fcDoiLGItc9Xq1tF5LPhzIBNcbhtFSDApYVG76UBXD-W1CqCydwTUrJupyYPPKFB8c8InkdKBcXoH4qh3_qYSDHJ4/s1600/IMG_20170628_194703.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzwovuLTO5VgojfGnyarRIoS57XFpZVgIuhQrH2gt6euOQ43bLo0fcDoiLGItc9Xq1tF5LPhzIBNcbhtFSDApYVG76UBXD-W1CqCydwTUrJupyYPPKFB8c8InkdKBcXoH4qh3_qYSDHJ4/s400/IMG_20170628_194703.jpg" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja4Yz0-B1xgwwjfUG6Epu-x83q0nBT-Z3xMI4StlAEqGIsv3W959ODeKgmwQt3ZI_3UvYvUrLF5q8zokHBHKb9SoombHwD6oTPZPofA8zzgcMTO5bjetDa2kG0EUcmTzC9PMYNGh9hVWw/s1600/IMG_20170512_073124.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja4Yz0-B1xgwwjfUG6Epu-x83q0nBT-Z3xMI4StlAEqGIsv3W959ODeKgmwQt3ZI_3UvYvUrLF5q8zokHBHKb9SoombHwD6oTPZPofA8zzgcMTO5bjetDa2kG0EUcmTzC9PMYNGh9hVWw/s320/IMG_20170512_073124.jpg" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaf4ATrc96T9vY1xkuqhDq0S60yKI5Wpp7QMlRGf24wW9F6URp0wpXCsysA4FRqG2O1U8fUwSgoRBky5srr9KI0X7dm0o4j0LjA2chIDXDoXUIzlBw_uXLF3rm3BrVJ2sc-RupQHyxb6E/s1600/FB_IMG_1496727796132.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="961" data-original-width="1438" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaf4ATrc96T9vY1xkuqhDq0S60yKI5Wpp7QMlRGf24wW9F6URp0wpXCsysA4FRqG2O1U8fUwSgoRBky5srr9KI0X7dm0o4j0LjA2chIDXDoXUIzlBw_uXLF3rm3BrVJ2sc-RupQHyxb6E/s400/FB_IMG_1496727796132.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0oK2gtYbo5SJ_KjN7KREDYknlignnTqo6wQ2_-kCyQgP8JFaPGgUQYj4sztclPA8Y0HJDOFU6VohuPE91XO5Wz4p9nHclTHOGhyvXnYLU3h1C4jn0gRL90fWB1Hh5bwEyAdIWhG-mpXE/s1600/FB_IMG_1495845194126.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="694" data-original-width="508" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0oK2gtYbo5SJ_KjN7KREDYknlignnTqo6wQ2_-kCyQgP8JFaPGgUQYj4sztclPA8Y0HJDOFU6VohuPE91XO5Wz4p9nHclTHOGhyvXnYLU3h1C4jn0gRL90fWB1Hh5bwEyAdIWhG-mpXE/s400/FB_IMG_1495845194126.jpg" width="292" /></a></div>
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-42947502630695496482017-07-09T19:15:00.000-07:002017-07-10T17:55:06.122-07:00Find A Way<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH4MRmxQcYdL5S5FdpgEv6YRO0TQwchddKLE73Kp6hwF7M1jozlIWdg4E_xACrN6i7zEpOJ2l4Lyn7wCDWNq2HHdCck2guV7bTiSXIhCM3bi1XF9uEZ4hjBWRYF0G6ReQHUB2Mghrz_58/s1600/IMG_20170706_140925.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH4MRmxQcYdL5S5FdpgEv6YRO0TQwchddKLE73Kp6hwF7M1jozlIWdg4E_xACrN6i7zEpOJ2l4Lyn7wCDWNq2HHdCck2guV7bTiSXIhCM3bi1XF9uEZ4hjBWRYF0G6ReQHUB2Mghrz_58/s640/IMG_20170706_140925.jpg" width="480" /></a></div>
<br />
Those were the words of Merril Hoge, NFL great, ESPN commentator and cancer survivor. <br />
<br />
I was of course skeptical (It's in my nature). I've sat through many a corporate event where legends have described what has helped them achieve the impossible. <br />
<br />
Listening to Mr. Hoge was a little different. He humbly described himself as a "C" student of average speed, strength and height. He humbly described how he indirectly received "the secret" from his idol, Walter Payton.... "I wanted it more. I found a way". It struck me that he described himself as an average guy who found a way to achieve the impossible.<br />
<br />
Mr. Hoge described sitting on the couch, suffering through the excruciating pain of chemotherapy (perhaps feeling sorry for himself), when his young daughter climbed onto his lap and reminded him of the secret..... "Daddy, Want it more. Find a Way".<br />
<br />
Wednesday of last week, I traveled, with Ezra, to Pittsburgh for the 2017 BDSRA Batten Disease Family Conference. It is a long trip to Pittsburgh and we decided that a red-eye to Newark and then Pittsburgh would be a lot for Maya. Plus... truth be told... we didn't know what to expect.<br />
<br />
My friend Alex nailed it on the head... this conference is not a "pity party". It is a chance for friends, new and old, to greet each other with a hug and not have to "explain". Yes, we enjoyed a weekend of not having to "explain". Simply put, we celebrated this extended family.<br />
<br />
It was a weekend where we met with researchers, clinicians, scientists and pharmaceutical companies, presented our children and reminded them that we want them to do better. Yes, they have done much, but we want to "Find a Way". Not just for our individual children, but our entire Batten Community.<br />
<br />
It was a weekend where THE STRUGGLE was celebrated.<br />
<br />
Personally, I'm reinvigorated (I've been exhausted). I have my notebook of action items to close. I have memories of long time friends, that I only this weekend met in person. My heart is filled with new stories of children and families who are fighting the good fight. <br />
<br />
I have memories of families who...<br />
<br />
<b><span style="font-size: large;">Want it More </span></b>and are willing to <b><span style="font-size: large;">Find a Way</span></b>.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV0f-24HPD_uCHeAVYrYVhiNXYQG94lJOiOj3FpeAHXedeOa43jt3B-iO90tAwbYcu0hB5ffr3qojhwV7XrPaIUutHQTcKSLjQux520SU-btIm78m6BEZK8mCuKPRJzmj8Bd2QFaLrDrI/s1600/IMG_20170709_124252.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV0f-24HPD_uCHeAVYrYVhiNXYQG94lJOiOj3FpeAHXedeOa43jt3B-iO90tAwbYcu0hB5ffr3qojhwV7XrPaIUutHQTcKSLjQux520SU-btIm78m6BEZK8mCuKPRJzmj8Bd2QFaLrDrI/s640/IMG_20170709_124252.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Road trip'n with Ezra.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9AMfIQIbTJIk1eckzBg0ALh07w6sAaN_DVaOj_GB5i6iExJCV6u6SqAALd8VSvJHbdiuR4gpq5CEZq-OiM3xra3-GsajGfzOdN4Po7TkuNctUzzfwinARHJMrJ9_novjnP3W4wZObl4s/s1600/IMG_20170709_094001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9AMfIQIbTJIk1eckzBg0ALh07w6sAaN_DVaOj_GB5i6iExJCV6u6SqAALd8VSvJHbdiuR4gpq5CEZq-OiM3xra3-GsajGfzOdN4Po7TkuNctUzzfwinARHJMrJ9_novjnP3W4wZObl4s/s640/IMG_20170709_094001.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Nothing like a custom Omelette.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKcC-Yvs9nDQ4T1qfL9pRW_SdpiLg6gwEgaX2DPjrM1BcV-v8ThdS6J-TrqdsGMNRs3f1v2fpzrRg4e6ywu9EyXp1krRtmEGtiL-2c1fLrCy_Frf-o01DkC3NG4SdmEt_hyUF9ahS4cdc/s1600/IMG_20170706_215739.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKcC-Yvs9nDQ4T1qfL9pRW_SdpiLg6gwEgaX2DPjrM1BcV-v8ThdS6J-TrqdsGMNRs3f1v2fpzrRg4e6ywu9EyXp1krRtmEGtiL-2c1fLrCy_Frf-o01DkC3NG4SdmEt_hyUF9ahS4cdc/s640/IMG_20170706_215739.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Ezra's first "real steak". Thank you, Ruth Chris, Pittsburgh. In case you are wondering, the Steak won.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTDMVP6Q14adNhCN_6lC2ojgHIBlqgswa4Jn_EF_m9xOrry-ILp4R03-jQ8PmhM860aQbaNe12MDLDoo7GZT5LfIHBdKxBOI5iMWN7KgNxP8PvsYw-bKuvWUev5-zgvdhRFJMntz-sdIY/s1600/IMG_20170707_121857.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTDMVP6Q14adNhCN_6lC2ojgHIBlqgswa4Jn_EF_m9xOrry-ILp4R03-jQ8PmhM860aQbaNe12MDLDoo7GZT5LfIHBdKxBOI5iMWN7KgNxP8PvsYw-bKuvWUev5-zgvdhRFJMntz-sdIY/s640/IMG_20170707_121857.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Our #FightingForMaya Post</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHNeAGm-48QzSZn26I-we2jfVckLk_FiLcWqWWrAQk9XBH2OdXAo1DTo1NHRbHx11aiTy08oRHSl1xTsURvymOESi4vUxm1P1SktrbY4nOtBX-sqZDaoTJlELubouZYygjExXqBQPrdvg/s1600/00000IMG_00000_BURST20170709101248.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHNeAGm-48QzSZn26I-we2jfVckLk_FiLcWqWWrAQk9XBH2OdXAo1DTo1NHRbHx11aiTy08oRHSl1xTsURvymOESi4vUxm1P1SktrbY4nOtBX-sqZDaoTJlELubouZYygjExXqBQPrdvg/s640/00000IMG_00000_BURST20170709101248.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Jacoby was the first person in the United States that I found with Maya's disorder. This weekend was the first time that I met Jacoby and his family in person.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFJlvvYeCtLya-Cw_CPdLT3E0WhExqcb1INLmplDtIyHbfXryBtTJUj1vOzweIebamTrbNn8QADAN2gS3y8R0F2CWLK9f08ANoSxPJCTvb9uN84X6msZR644uT6HatMRWZHN5y1Hf4DF4/s1600/IMG_20170707_142439.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFJlvvYeCtLya-Cw_CPdLT3E0WhExqcb1INLmplDtIyHbfXryBtTJUj1vOzweIebamTrbNn8QADAN2gS3y8R0F2CWLK9f08ANoSxPJCTvb9uN84X6msZR644uT6HatMRWZHN5y1Hf4DF4/s640/IMG_20170707_142439.jpg" width="480" /></a></div>
<br />
It was great to visit with Dr. Emily. Our family's friend for life.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp10CMfnoOmXvd1ytSW8lfonT3Fn58-h6GE2nT-g8U7BzP89OTfsh3dYOtUBNC1hkuRV6AZqy4nb1tBn2K2yeVwBRMfFj8K-5MMvbZ85AHasqpFfJxqfWmx5Mugo9Si1hInOWo5r-nFYY/s1600/IMG_20170707_142533.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp10CMfnoOmXvd1ytSW8lfonT3Fn58-h6GE2nT-g8U7BzP89OTfsh3dYOtUBNC1hkuRV6AZqy4nb1tBn2K2yeVwBRMfFj8K-5MMvbZ85AHasqpFfJxqfWmx5Mugo9Si1hInOWo5r-nFYY/s640/IMG_20170707_142533.jpg" width="480" /></a></div>
<br />
Shelli... a reminder that nurses make the world go round.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS4PMhZ-BJyBrvgHuW4Y-fIG_ZFDtaGLVUFpPJh1do0y8KzKoXWJrI_RcL_PYNyIPT-lG82bfDguElV4pCLgW46nS7ki7IdrEVgP_G2KRhi6Jni6IW2nla_JNLcKP5_wELAg0YugOkw6Q/s1600/IMG_20170706_094319.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS4PMhZ-BJyBrvgHuW4Y-fIG_ZFDtaGLVUFpPJh1do0y8KzKoXWJrI_RcL_PYNyIPT-lG82bfDguElV4pCLgW46nS7ki7IdrEVgP_G2KRhi6Jni6IW2nla_JNLcKP5_wELAg0YugOkw6Q/s640/IMG_20170706_094319.jpg" width="480" /></a></div>
<br />
Heinz Stadium<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNr9JbXOlN3aKNUEZklsJs-RV0-NB3xFgbb4NzM1YqbYksWXofoHSD3DN1iAsqlIbK_lBnJMpsSHEUVfPvhpmWlHHDW7fu2Mk-EU2bEOTWprPgIu1Un9AGIlPoktisMwHt3lN0FyVIz1s/s1600/IMG_20170706_094124.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNr9JbXOlN3aKNUEZklsJs-RV0-NB3xFgbb4NzM1YqbYksWXofoHSD3DN1iAsqlIbK_lBnJMpsSHEUVfPvhpmWlHHDW7fu2Mk-EU2bEOTWprPgIu1Un9AGIlPoktisMwHt3lN0FyVIz1s/s640/IMG_20170706_094124.jpg" width="640" /></a></div>
<br />
Fort Pitt Park<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwReqPahd5EqllLfg9-fWsP3CJKbSysQ0wRbJOheG7f5ickcL82AfSKPLFpMbr8UvFuw-muPZYnsnKFFhF19YaW8MyVfENjOJd3j2wRPoc4-p4yzzEuW-m4Ym77ypciP35QBAJp5u7TiI/s1600/IMG_20170706_094119.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwReqPahd5EqllLfg9-fWsP3CJKbSysQ0wRbJOheG7f5ickcL82AfSKPLFpMbr8UvFuw-muPZYnsnKFFhF19YaW8MyVfENjOJd3j2wRPoc4-p4yzzEuW-m4Ym77ypciP35QBAJp5u7TiI/s640/IMG_20170706_094119.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Fort Pitt Park. Before it was Fort Pitt, the French held this territory as<span style="background-color: white; color: #222222; font-family: sans-serif; font-size: 14px;"> </span><a href="https://en.wikipedia.org/wiki/Fort_Duquesne" style="background: none rgb(255, 255, 255); color: #0b0080; font-family: sans-serif; font-size: 14px; text-decoration-line: none;" title="Fort Duquesne">Fort Duquesne</a>. The serendipity of this location and its history was not lost upon my deepest desire to better understand the root cause of Maya's disorder.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlVk7rpirGTgQGiMC8w957khwq4tX2eaAwi4k-FD3OXbBSM879d2HexWJHYZGjufWt8BfE-MT4Cf4B05lowbZ_NyFOUJeYogsD21i-Lh2fuNqxf0h2tkPT33WSkj3GbE8E6Zxo1FBhUI/s1600/IMG_20170706_094003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlVk7rpirGTgQGiMC8w957khwq4tX2eaAwi4k-FD3OXbBSM879d2HexWJHYZGjufWt8BfE-MT4Cf4B05lowbZ_NyFOUJeYogsD21i-Lh2fuNqxf0h2tkPT33WSkj3GbE8E6Zxo1FBhUI/s640/IMG_20170706_094003.jpg" width="480" /></a></div>
Fort Pitt<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKstTIISdtHny4czGJ5fcELV7HfJp3BOLsH-7nO-uQ_599uqwexN6JTNNY8U-lKa13_HjSdhbfVE5btvEKJRw1YhKytclP9tpw5mG4t-UR6xOsQAvPkVmK9bt5SFxbNX6vajJqzvHqMLM/s1600/IMG_20170706_093642.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKstTIISdtHny4czGJ5fcELV7HfJp3BOLsH-7nO-uQ_599uqwexN6JTNNY8U-lKa13_HjSdhbfVE5btvEKJRw1YhKytclP9tpw5mG4t-UR6xOsQAvPkVmK9bt5SFxbNX6vajJqzvHqMLM/s640/IMG_20170706_093642.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Bridge over Fort Pitt.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMbUYmThtFOE7Uqb8bUpwkH1HdNi2OT_IeVCaiVhi8LPR2gUp_zsnI3keGl11gl824o9mXwk6kjU8nC12mXyZLKZtR5hiPptPEMRyW_nyXMCJelkZgLlbaDg4W_cqe0Cz9u65EK_txvWM/s1600/IMG_20170706_084322.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMbUYmThtFOE7Uqb8bUpwkH1HdNi2OT_IeVCaiVhi8LPR2gUp_zsnI3keGl11gl824o9mXwk6kjU8nC12mXyZLKZtR5hiPptPEMRyW_nyXMCJelkZgLlbaDg4W_cqe0Cz9u65EK_txvWM/s640/IMG_20170706_084322.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
The beautiful view from our room.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVc9fHuCfcr6VcZnyl7MvCPFTlo4W2mxk9wm3Oah9ZMSspJiV_TS4jdHMUAzn6mJrRW6JoWw-wcsgfM5siKwgth_x0dqAP0fNy_Pu9Xe7HClbinn2LscrUkxndzIvKtXHz10OZbwgAggE/s1600/IMG_20170706_083654.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVc9fHuCfcr6VcZnyl7MvCPFTlo4W2mxk9wm3Oah9ZMSspJiV_TS4jdHMUAzn6mJrRW6JoWw-wcsgfM5siKwgth_x0dqAP0fNy_Pu9Xe7HClbinn2LscrUkxndzIvKtXHz10OZbwgAggE/s640/IMG_20170706_083654.jpg" width="480" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicTENafxQidtKjEVuzfH0_g_caPc3EXkjUaFaxWt1EKaE5F2kvAca39uZ0uaewvmvnqWwsuCNvH7YvjgxOY-dhxsRjrzYinCMJpu7P4DrJnMRYi5y1_3XWQv3VkOb2QuivExx3wRvJzX0/s1600/IMG_20170706_083643.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicTENafxQidtKjEVuzfH0_g_caPc3EXkjUaFaxWt1EKaE5F2kvAca39uZ0uaewvmvnqWwsuCNvH7YvjgxOY-dhxsRjrzYinCMJpu7P4DrJnMRYi5y1_3XWQv3VkOb2QuivExx3wRvJzX0/s640/IMG_20170706_083643.jpg" width="480" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvwOhJ6gNoAJlLSqK-yBMhWXttG23INBVm_IxOuNiN0rTOdzSgVany2wILB1nfzJKYnJM0xPZk4_4jzUW_iaux4Bv3qtzwBQh6SQlRVk2Vf6trMUbG2x3Gl0w7C0WJqImNOO48KuPlVfg/s1600/IMG_20170706_074936.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvwOhJ6gNoAJlLSqK-yBMhWXttG23INBVm_IxOuNiN0rTOdzSgVany2wILB1nfzJKYnJM0xPZk4_4jzUW_iaux4Bv3qtzwBQh6SQlRVk2Vf6trMUbG2x3Gl0w7C0WJqImNOO48KuPlVfg/s640/IMG_20170706_074936.jpg" width="480" /></a></div>
<br />
A little Football History.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHJsneZUlwD-FDgVpfnhMXGC2HNVaaFNrP9NpabkgGT5KhEKjetR5qXojC1H2xH76tYhhbMVkUUxWrPIvh5SgcEMB9Se7NRBPYLH_BMIh_oBWf2SRweS8bpOaDeCVBHR0JYwjfMNVa_HI/s1600/IMG_20170706_053514.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHJsneZUlwD-FDgVpfnhMXGC2HNVaaFNrP9NpabkgGT5KhEKjetR5qXojC1H2xH76tYhhbMVkUUxWrPIvh5SgcEMB9Se7NRBPYLH_BMIh_oBWf2SRweS8bpOaDeCVBHR0JYwjfMNVa_HI/s640/IMG_20170706_053514.jpg" width="640" /></a></div>
<br />
Sunrise over Manhattan.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgghBKSXwjaCqPDUeB-zzbhjDcMYkKeoQIP4pA_rJITI2tWlqQMPjEIaGVbadgy7lQlwEjECCCUfnagifJo-cYagf3GX1VZBaOGyoKDdxe60pENlSIRi21MZEKMRKvy6Qsm9GC7uNWxCtU/s1600/IMG_20170706_053407.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgghBKSXwjaCqPDUeB-zzbhjDcMYkKeoQIP4pA_rJITI2tWlqQMPjEIaGVbadgy7lQlwEjECCCUfnagifJo-cYagf3GX1VZBaOGyoKDdxe60pENlSIRi21MZEKMRKvy6Qsm9GC7uNWxCtU/s640/IMG_20170706_053407.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: start;">Sunrise over Manhattan.</span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghiNJn4bw-qeLZKpCKVm86jLkDAkXSBnm0G-Omn5m4qVGMCbmjmEROmVcaXkGhFjZIxcJQeriRnnoXXdZq9fiMIUp4kJvgOD_TsKKA4aAUeP_cxKmvCi5DXsPlQUcM0TuP1Y504kTrGYw/s1600/IMG_20170706_053351.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghiNJn4bw-qeLZKpCKVm86jLkDAkXSBnm0G-Omn5m4qVGMCbmjmEROmVcaXkGhFjZIxcJQeriRnnoXXdZq9fiMIUp4kJvgOD_TsKKA4aAUeP_cxKmvCi5DXsPlQUcM0TuP1Y504kTrGYw/s640/IMG_20170706_053351.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: start;">Sunrise over Manhattan.</span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt3Q_qqEw7YTmhloOj5kNTzQehm3qOlOTlCb8U-3lqB3Qzgay48wdReRjEvwqihcyNk8nHU5ekU3gGq3iLn55MHJuwu9zcuAvuGi1FJWpwn1qlqdqeJxaKWSvZNXLMT6MuXBlmu8-Eg8c/s1600/IMG_20170706_053341.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt3Q_qqEw7YTmhloOj5kNTzQehm3qOlOTlCb8U-3lqB3Qzgay48wdReRjEvwqihcyNk8nHU5ekU3gGq3iLn55MHJuwu9zcuAvuGi1FJWpwn1qlqdqeJxaKWSvZNXLMT6MuXBlmu8-Eg8c/s640/IMG_20170706_053341.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: start;">Sunrise over Manhattan. Upside of a red-eye into Newark.</span></div>
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-55843314300258241312017-05-30T14:46:00.001-07:002017-05-30T14:46:38.231-07:00Everything Matters: Understanding the Fight Against Batten Disease<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
I'm always amazed and thankful for the amazing work that so many put into fighting this horrible disease and supporting this community. Thank you, <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=760117969&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/LathenGorbett?fref=mentions" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;">Lathen</a>, <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=5526019&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/profile.php?id=5526019&fref=mentions" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;">Karli</a>, <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=100014665838194&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/ivana.polonijo.12?fref=mentions" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;">Ivana</a>, Scott, <a class="profileLink" data-hovercard-obj-id="1710593232514668" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=1710593232514668&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/aquanautsphotography/?fref=mentions" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;">Aquanauts Photography</a>, <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=1160725022&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/suzette.james.12?fref=mentions" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;">Suzette</a>, <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=1075963195&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/margie.frazier.7?fref=mentions" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;">Margie</a> and Christina Amiri for this well done and informative podcast.</div>
<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
If you haven't listened, block an hour and pour yourself a glass of wine. It is worth the time.</div>
<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
<br /></div>
<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
<a href="http://cafemedium.com/podcast/everything-matters-understanding-the-fight-against-batten-disease" target="_blank">http://cafemedium.com/podcast/everything-matters-understanding-the-fight-against-batten-disease</a></div>
<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
<br /></div>
<div style="background-color: white; color: #1d2129; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-top: 6px;">
<a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/fightingformaya?source=feed_text&story_id=1518561738214999" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #4267b2; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">FightingForMaya</span></span></a>, <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/everythingmatters?source=feed_text&story_id=1518561738214999" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #4267b2; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">EverythingMatters</span></span></a>, <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/bdsra?source=feed_text&story_id=1518561738214999" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #4267b2; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">BDSRA</span></span></a>, <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/battendisease?source=feed_text&story_id=1518561738214999" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #4267b2; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">BattenDisease</span></span></a></div>
bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-57305076838170898722017-05-29T15:44:00.000-07:002017-05-29T15:44:42.577-07:00Working Hard<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6YSI1y345yRiip_hZgsGOvykl42dxxrxyLSws28M7-YA5e3D7bXiWuOaNfYUUqtAiBR-NG8K_ZFFDRvEVXIXh1_6NnZeba5EZLdAn8VymNx6-_ijQBBbRHB4VSInYLrZvScOIo-4kEfY/s1600/IMG_20170528_112302.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6YSI1y345yRiip_hZgsGOvykl42dxxrxyLSws28M7-YA5e3D7bXiWuOaNfYUUqtAiBR-NG8K_ZFFDRvEVXIXh1_6NnZeba5EZLdAn8VymNx6-_ijQBBbRHB4VSInYLrZvScOIo-4kEfY/s400/IMG_20170528_112302.jpg" width="300" /></a></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
It has been way too long and I feel like I owe you an update. Unfortunately, I'm not there yet. <div>
<br /></div>
<div>
Instead, I thought that I would share this video. </div>
<div>
<br /></div>
<div>
I finally had the chance to join Maya for one of her climbing sessions. I can't tell you what it means to see Maya make her way up this wall. As I wiped away the tears, I tried not to embarrass her, but it was all I could do to not scream and jump up and down. Yes, Maya can't walk or stand on her own, but she can climb....</div>
<div>
<br /></div>
<div>
We still have a ton of work ahead of us, but for now, I share this moment with you.</div>
<div>
<a href="https://www.blogger.com/goog_200545537"><br /></a></div>
<div>
<a href="https://youtu.be/CkMYRIaI1sQ">https://youtu.be/CkMYRIaI1sQ</a></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
Thank you, Coach Jillian and @MesaRimClimbing</div>
bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com1tag:blogger.com,1999:blog-2824559967983244468.post-68421589297227217862017-05-14T20:32:00.000-07:002017-05-14T20:32:21.438-07:00A #FightingForMaya ArticleA well done article about Maya and our Family.<br />
<br />
<a href="http://www.sandiegouniontribune.com/news/columnists/sd-me-dickey-0515-story.html" target="_blank">http://www.sandiegouniontribune.com/news/columnists/sd-me-dickey-0515-story.html</a>bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-71589702121229738642017-04-28T16:30:00.000-07:002017-04-28T19:57:29.528-07:00An Amazing Week<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEs_dVl7Z_8wWVVrRJThqDNTPwHW0W3hO4KEIe6L3CeeQF7EgDD7Ufr9xfAz8BqGx0oN-nzsPAgNqOfyPZ4MDnrijZBj48YeK_lqcSg3_GciV0T0bCrkWZLZqynxaY-r89a9YfFvAx4_o/s1600/IMG_20170428_083635+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEs_dVl7Z_8wWVVrRJThqDNTPwHW0W3hO4KEIe6L3CeeQF7EgDD7Ufr9xfAz8BqGx0oN-nzsPAgNqOfyPZ4MDnrijZBj48YeK_lqcSg3_GciV0T0bCrkWZLZqynxaY-r89a9YfFvAx4_o/s320/IMG_20170428_083635+%25281%2529.jpg" width="320" /></a></div>
<br />
It was definitely an amazing week. Throughout it all (i.e., the approval, the interviews and the messages of relief), the most touching moment was when two of Maya's classmates approached us Monday morning and presented two sandwich bags full of cash and coins. They had raised money selling their artwork and wanted to donate the proceeds to the research project at <a href="http://www.fightingformaya.com/news.html" target="_blank">Texas Children's Hospital</a>. It was their wish to help Maya and young people like her fighting batten disease. It was a selfless and touching gesture representative of Maya's school and community. Thank you #SDCCS and all of you who make weeks like this one so special. <br />
<br />
#FightingForMaya<br />
<br />
Below are links to the latest news about the approval and interviews from our local station.<br />
<br />
<a href="https://www.youtube.com/watch?v=7OhimYD_c7I">https://www.youtube.com/watch?v=7OhimYD_c7I</a><br />
<br />
<a href="https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm555613.htm">https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm555613.htm</a><br />
<br />
<a href="http://www.10news.com/news/fda-approves-treatment-for-local-teen-with-rare-disease?autoplay=true">http://www.10news.com/news/fda-approves-treatment-for-local-teen-with-rare-disease?autoplay=true</a><br />
<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com1tag:blogger.com,1999:blog-2824559967983244468.post-71961347481984891102017-04-20T15:58:00.001-07:002017-04-20T15:58:59.529-07:00#FightingForMaya has a Jimmy Kimmel Live Cameo<a href="https://www.youtube.com/watch?v=t9ghCcRrXpM&t=3s">https://www.youtube.com/watch?v=t9ghCcRrXpM&t=3s</a>bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-41694540862549586342017-03-24T20:43:00.000-07:002017-03-25T18:35:05.364-07:00A FightingForMaya Update: Chapter 12<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm6fZ0_nUWwZELY9BaZk8LE8uKs1WzRrQVP7JAzwYeGBwQaa7INEA_wsCMREuN7xetvASR6rgOTccpo8uSkDd6_4WVamhIsSaigG67Em9nsA4-fvWa-zHQ9F0Vj_TisEjQE1yEwD2Gc6I/s1600/bDSC_6036.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm6fZ0_nUWwZELY9BaZk8LE8uKs1WzRrQVP7JAzwYeGBwQaa7INEA_wsCMREuN7xetvASR6rgOTccpo8uSkDd6_4WVamhIsSaigG67Em9nsA4-fvWa-zHQ9F0Vj_TisEjQE1yEwD2Gc6I/s400/bDSC_6036.jpg" width="400" /></a></div>
</div>
<div>
<br />
This is one of those days when the written word fails to capture it all....</div>
<div>
<br /></div>
<div>
<span style="font-size: large;">T</span>wo weeks ago we said goodbye to Columbus, Ohio. We said "until next time" to our new found friends... those friends who welcomed us into their homes, at their tables and into their hearts. </div>
<div>
<br /></div>
<div>
<span style="font-size: large;">W</span>e tearfully said "Thank you for saving Maya's life..." to the doctors and nurses of Nationwide Children's Hospital. </div>
<div>
<br /></div>
<div>
Hopefully, we left Columbus better than when we first arrived.</div>
<div>
<br /></div>
<div>
<span style="font-size: large;">T</span>oday, Maya had her first infusion at Children's Hospital of Orange County. A milestone, because today marked the opening of the second facility in the western hemisphere to support this treatment. Personally, we now only travel an hour and a half by car for Maya's infusions. Most important, Maya's care has been successfully transitioned from one loving team to another. </div>
<div>
<br /></div>
<div>
<span style="font-size: large;">T</span>hough we quietly celebrate the milestones of today, there is of course a footnote. Specifically, this treatment is still under FDA review. The FDA has given itself a deadline of April 27th to make a decision (i.e., "yes", "no" or "we want more time to review"). I've asked what can be done to help the decision process and the resounding response is.... "Pray". We've asked much of our community and at this time we humbly ask that you send a prayer for a fast approval of this treatment by the FDA. Simply...there are too many families waiting and too many beautiful children progressing too far. Thank you.</div>
<div>
<br /></div>
<div>
<span style="font-size: large;">M</span>aya is doing well. She has endured a lot over the last couple of months and she continues to face each day with her beautiful smile and determined will.</div>
<div>
<br /></div>
<div>
Below are a few pictures from the last couple of months.</div>
<div>
<br /></div>
<div>
Thank you for your continued love and support.</div>
<div>
<br /></div>
<div>
#FightingForMaya</div>
<div>
<div class="gmail_signature" data-smartmail="gmail_signature">
<div dir="ltr">
<div dir="ltr">
<div dir="ltr">
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
<a href="http://www.fightingformaya.com/" style="color: #1155cc;" target="_blank">www.fightingformaya.com</a></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
<a href="http://bjames358.blogspot.com/" style="color: #1155cc;" target="_blank">http://bjames358.blogspot.com/</a></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXuXdVy2eNodHBMyH_91TWfLOsYpwR-7gEdra7GSjyz55epeNhi254ovU4irZU6qvSIe6yfO0EFaSNP1qIO3ygtMqOiX-8fjXB3oIbEZw1AShSqRFfSlqbEGiNV7w6HroBP3ZuVtVU_nU/s1600/IMG_20170324_182351.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXuXdVy2eNodHBMyH_91TWfLOsYpwR-7gEdra7GSjyz55epeNhi254ovU4irZU6qvSIe6yfO0EFaSNP1qIO3ygtMqOiX-8fjXB3oIbEZw1AShSqRFfSlqbEGiNV7w6HroBP3ZuVtVU_nU/s320/IMG_20170324_182351.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj77FzC_wCD379wYdxOpklpVwm_oGf14oXOilUMeGQaBdUHCnNlqPsT-m_jgqXamMTSHfUHaU6HpWJMd2TPDOn0SRU3TKvkO-S80SbsgzV5sxBcqtOMsa79X8S-bWwV8nDpAEM6Rqe2F1U/s1600/IMG_20170324_132309.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj77FzC_wCD379wYdxOpklpVwm_oGf14oXOilUMeGQaBdUHCnNlqPsT-m_jgqXamMTSHfUHaU6HpWJMd2TPDOn0SRU3TKvkO-S80SbsgzV5sxBcqtOMsa79X8S-bWwV8nDpAEM6Rqe2F1U/s320/IMG_20170324_132309.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_qM1TT8NH8oJ47jHXIuuH1sEVJzXg-v9rxJO5RDPWWtVpRapPmEnmMlarPWK_phmBwui1w6eooJNZkaiUtZsojAwgAEtFtp40pT9AQO4tcd6H1BSCeFwwXNUjHaxYY4vMkxmGEUFcyaI/s1600/IMG_20170324_090551.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_qM1TT8NH8oJ47jHXIuuH1sEVJzXg-v9rxJO5RDPWWtVpRapPmEnmMlarPWK_phmBwui1w6eooJNZkaiUtZsojAwgAEtFtp40pT9AQO4tcd6H1BSCeFwwXNUjHaxYY4vMkxmGEUFcyaI/s320/IMG_20170324_090551.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7OV86gEzUKKnYNrdaQeGvKwwvsm29y23xdizq3XIQGimp62nSiI6rBVzmodwuIZYIo61h0jYf0FGOAyFzK-GaGDRahYHkOrSa93gqMzTocy2CtIcVZxEUnzY4Y7OW_oHUphM60r4bk9U/s1600/IMG_20170324_071612.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7OV86gEzUKKnYNrdaQeGvKwwvsm29y23xdizq3XIQGimp62nSiI6rBVzmodwuIZYIo61h0jYf0FGOAyFzK-GaGDRahYHkOrSa93gqMzTocy2CtIcVZxEUnzY4Y7OW_oHUphM60r4bk9U/s320/IMG_20170324_071612.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6uHblrKx6o0lyZXDJ847HbhuTqwGG5D6lvC7LizNPmvWtEg_cRLugJ061nxDr40L0zR1PMmjdJDXxcVtVEBu4RDUAmgi91weQMhlGdn5o50XxNbSpvYSqc8LbIzy1BzJp_RhJiKRWlzE/s1600/IMG_20170324_070215.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6uHblrKx6o0lyZXDJ847HbhuTqwGG5D6lvC7LizNPmvWtEg_cRLugJ061nxDr40L0zR1PMmjdJDXxcVtVEBu4RDUAmgi91weQMhlGdn5o50XxNbSpvYSqc8LbIzy1BzJp_RhJiKRWlzE/s320/IMG_20170324_070215.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmxhs7_EerqF0mwEj2FG5LR2Try5r98vS1JaAmSVqc8mfv7dgYazV1jeJOeMGFsql4q8Q80a2kuNjfiXAes_p_MEDzwm7jbHIlVX2wa7_wSpMztil-6dthmyS3HupCZiJwKPhnwnfyQOw/s1600/IMG_20170324_063418.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmxhs7_EerqF0mwEj2FG5LR2Try5r98vS1JaAmSVqc8mfv7dgYazV1jeJOeMGFsql4q8Q80a2kuNjfiXAes_p_MEDzwm7jbHIlVX2wa7_wSpMztil-6dthmyS3HupCZiJwKPhnwnfyQOw/s320/IMG_20170324_063418.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwqgfNmKdi0x6EyJxawstqG4qXP7fAX2m3YosMt3Rv6ybqQ52aq2gOxky_1T9MX0nh-2bYs3n9GAMxYqL2m50tcn5kJQCzM8NH9FCDRU5QSGtSL2mbusLPF8YutBnXl9679hNeFtlwg3w/s1600/IMG_20170324_063412.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwqgfNmKdi0x6EyJxawstqG4qXP7fAX2m3YosMt3Rv6ybqQ52aq2gOxky_1T9MX0nh-2bYs3n9GAMxYqL2m50tcn5kJQCzM8NH9FCDRU5QSGtSL2mbusLPF8YutBnXl9679hNeFtlwg3w/s320/IMG_20170324_063412.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ-GZS9oqsFA-RpK6FR4tAEss87Af9vv4_pue5QDwYNNVb4L2smBKHixCM_Ho7ZlLOtJgqV3NCeFGgga1te4vnrxq8oSgnJnv4_pDGe8SiWppNVvSPMYw8qeSSs7FwFBGdT_ZyCM2HKLo/s1600/IMG_20170308_174643.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ-GZS9oqsFA-RpK6FR4tAEss87Af9vv4_pue5QDwYNNVb4L2smBKHixCM_Ho7ZlLOtJgqV3NCeFGgga1te4vnrxq8oSgnJnv4_pDGe8SiWppNVvSPMYw8qeSSs7FwFBGdT_ZyCM2HKLo/s320/IMG_20170308_174643.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVkKnhNDd9l-dRztQLFxnbvJG3Ey7fyKRA17mAx-AS2CPoAuHjrqz2xQa95y9jHq1goWpxzpvRSXD8ElldV96-EIpHr4K3xMZlQy9QpCaTrb1GmzZ4-ECDMK27yxIQo5LXqgm0QtHCmo8/s1600/IMG_20170307_171838.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVkKnhNDd9l-dRztQLFxnbvJG3Ey7fyKRA17mAx-AS2CPoAuHjrqz2xQa95y9jHq1goWpxzpvRSXD8ElldV96-EIpHr4K3xMZlQy9QpCaTrb1GmzZ4-ECDMK27yxIQo5LXqgm0QtHCmo8/s320/IMG_20170307_171838.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhID8NTvxhSfcD7CnpTP3brF-NJQpXyObOOYvtErO_Hxl5njA2uLNC_Yz6ocStMIt6uHEO_QRnU4XCitVtNNffLnIXt7-lM-9a10hEIcN2baZjPxyoFkP3ARKRXy7iBVF8xpb2eP1NMHHM/s1600/IMG_20170307_162529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhID8NTvxhSfcD7CnpTP3brF-NJQpXyObOOYvtErO_Hxl5njA2uLNC_Yz6ocStMIt6uHEO_QRnU4XCitVtNNffLnIXt7-lM-9a10hEIcN2baZjPxyoFkP3ARKRXy7iBVF8xpb2eP1NMHHM/s320/IMG_20170307_162529.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5u_scXxuEZPYvQb59hStEt_htdk1UBrd_iSGzd_W7O_Ozu6n9MvEc3OsT17-PhwDQmSDno3ebVuKEXzIpstXKHm65eFhWSipWCumZlD6wf-ch3ipViaskztF-jECC8amgnIUSNg8qXzc/s1600/IMG_20170307_162244.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5u_scXxuEZPYvQb59hStEt_htdk1UBrd_iSGzd_W7O_Ozu6n9MvEc3OsT17-PhwDQmSDno3ebVuKEXzIpstXKHm65eFhWSipWCumZlD6wf-ch3ipViaskztF-jECC8amgnIUSNg8qXzc/s320/IMG_20170307_162244.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuL1lLPLuKcJB_ty_UFlKYIKapBVW8LlPsndjKxCeTkyYa9UDC8w8E0ej1AoE5pw0XiPXu2DrOaunHMDEv4hn5jSX1_gbQwdlU41gqdYgXyV_Nl367E_-MrsuAdkci2C_JYzs3HXM4PGA/s1600/IMG_20170307_145510.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuL1lLPLuKcJB_ty_UFlKYIKapBVW8LlPsndjKxCeTkyYa9UDC8w8E0ej1AoE5pw0XiPXu2DrOaunHMDEv4hn5jSX1_gbQwdlU41gqdYgXyV_Nl367E_-MrsuAdkci2C_JYzs3HXM4PGA/s320/IMG_20170307_145510.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7e8YaCXkSU4Qy5axRQJAOGv9MFpZTv1ogv9EtfV3-glocftX7yTsGNeximVUyl-6ouap3yrzPG5j78BPBJPdsM2ossskGwS5wuGOlEuIAOs-SXF-gZ2ZC1Kh6LE-tSA7GP_mcj7hF2YM/s1600/IMG_20170307_111427.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7e8YaCXkSU4Qy5axRQJAOGv9MFpZTv1ogv9EtfV3-glocftX7yTsGNeximVUyl-6ouap3yrzPG5j78BPBJPdsM2ossskGwS5wuGOlEuIAOs-SXF-gZ2ZC1Kh6LE-tSA7GP_mcj7hF2YM/s320/IMG_20170307_111427.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjpbjxhc6zDRdy5VnOABflSOPojGFtiITdhNxeEEudJFn70UsNnvcTCvPxi5sWNcmfpBEF3IfQxyADPWgQe0injslspZWGjRJLIxgnCD_ytNHW7zXi3WAk3HoGuVrpwwu_noKztgYa-Xs/s1600/IMG_20170305_150748.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjpbjxhc6zDRdy5VnOABflSOPojGFtiITdhNxeEEudJFn70UsNnvcTCvPxi5sWNcmfpBEF3IfQxyADPWgQe0injslspZWGjRJLIxgnCD_ytNHW7zXi3WAk3HoGuVrpwwu_noKztgYa-Xs/s320/IMG_20170305_150748.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHvASykEE-BxpeS7cZ9XurMvTs55h9aFpI28NQ8hyZ6Phjqs_ThCg4iip_7ny8rz4-61qLMS56aANjzFixGBh26inc6s8GfFywrVVNy14BbkjfbCjuKxLHBI9e8LXhgLrQJhRR3IXecyU/s1600/IMG_20170305_143643.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHvASykEE-BxpeS7cZ9XurMvTs55h9aFpI28NQ8hyZ6Phjqs_ThCg4iip_7ny8rz4-61qLMS56aANjzFixGBh26inc6s8GfFywrVVNy14BbkjfbCjuKxLHBI9e8LXhgLrQJhRR3IXecyU/s320/IMG_20170305_143643.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigRuCqt6yMOtdebpliZ1ADg_ESuud2d1YImgskJdinIQM0Z-kpP4hlvmFfPl6gCZbfWe0puuKakAr4Hsbdk9QJ9HuO2VT3xcFV2FVax3pEvehnI6J4NBRjpQUSe1UYIT01zKEvFgYps0Y/s1600/IMG_20170303_214457.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigRuCqt6yMOtdebpliZ1ADg_ESuud2d1YImgskJdinIQM0Z-kpP4hlvmFfPl6gCZbfWe0puuKakAr4Hsbdk9QJ9HuO2VT3xcFV2FVax3pEvehnI6J4NBRjpQUSe1UYIT01zKEvFgYps0Y/s320/IMG_20170303_214457.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE00IDL-C6SmJlCfE03Jx6bLJ6KX84oAgHeCdH0_utzS_Cg5Mmdd7K3SQMI-hmiefv-Jk6cKMLPzuWG_-l9YzRAw1KEJsdp0AY8YillasfZBX2btWOkeTHKuBC9fYKhf2GS0vFuD0cUmk/s1600/IMG_20170303_205202.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE00IDL-C6SmJlCfE03Jx6bLJ6KX84oAgHeCdH0_utzS_Cg5Mmdd7K3SQMI-hmiefv-Jk6cKMLPzuWG_-l9YzRAw1KEJsdp0AY8YillasfZBX2btWOkeTHKuBC9fYKhf2GS0vFuD0cUmk/s320/IMG_20170303_205202.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQNkSUy5MncR20HH1FYCUqEI3ryuZfPWYKU38BltTz-yDAhHU84wD4KWiBJknTjWPLh3jg-paLH7Fq-NFHfdVYv8jJHaCQRHjCqkWzALIz7v4UI2zpSDpatx3T0NTzJv8EC8PbOzNinbI/s1600/IMG_20170303_203105.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQNkSUy5MncR20HH1FYCUqEI3ryuZfPWYKU38BltTz-yDAhHU84wD4KWiBJknTjWPLh3jg-paLH7Fq-NFHfdVYv8jJHaCQRHjCqkWzALIz7v4UI2zpSDpatx3T0NTzJv8EC8PbOzNinbI/s320/IMG_20170303_203105.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDpnzpJgejAzVPa6nzSqDs0O66SsTzrQNA5IRV814LiC8WhwxaSlw03AiPmkSoDAYOm969veOUhJq2oo3TM2GI-SCRyZTSomslCDurFS_6REQBKY3pq9r43YhKYhsehAddC71BLfECzdM/s1600/IMG_20170303_185512.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDpnzpJgejAzVPa6nzSqDs0O66SsTzrQNA5IRV814LiC8WhwxaSlw03AiPmkSoDAYOm969veOUhJq2oo3TM2GI-SCRyZTSomslCDurFS_6REQBKY3pq9r43YhKYhsehAddC71BLfECzdM/s320/IMG_20170303_185512.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlerYuycHk3dmKAlkOFd_ezIu8Xs6ei1FKMgG9b631XxKjH-eQUQnOXnTq0oSbuoLJ9UD1JwxDcKdEj8lrBvD8WTTk-cc_1wX8nkWR67WC_IH3eIO3z81KebiKD3WH96QinPMBBXwbq34/s1600/IMG_20170303_093107.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlerYuycHk3dmKAlkOFd_ezIu8Xs6ei1FKMgG9b631XxKjH-eQUQnOXnTq0oSbuoLJ9UD1JwxDcKdEj8lrBvD8WTTk-cc_1wX8nkWR67WC_IH3eIO3z81KebiKD3WH96QinPMBBXwbq34/s320/IMG_20170303_093107.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2A4Ru82KkFHPobxi6uMsCgQzFxXYgsu1tzeGwXndrrFxAt-3UjwAOZGa-YLGTKBOTkOYG6rpAZoDIPusrpIiors0BmSO0u_wHpfXB0jvXJ0JTNYW40Cbu11-vAaz4pbBpEXO7L3Y9tFE/s1600/IMG_20170302_135408.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2A4Ru82KkFHPobxi6uMsCgQzFxXYgsu1tzeGwXndrrFxAt-3UjwAOZGa-YLGTKBOTkOYG6rpAZoDIPusrpIiors0BmSO0u_wHpfXB0jvXJ0JTNYW40Cbu11-vAaz4pbBpEXO7L3Y9tFE/s320/IMG_20170302_135408.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6AyT5LkRw99G6f0HayttJhGkthKH1jIPgBaaZooGFE81_vBfOJN97NrdEa_Q2hhH42h06vCakFCBYlaydf5ohMjy-gYnLO8fsfd8V5QD0LbPLDzy22viUizptfOKU4luZrNtPU7aGmw/s1600/IMG_20170302_123000.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6AyT5LkRw99G6f0HayttJhGkthKH1jIPgBaaZooGFE81_vBfOJN97NrdEa_Q2hhH42h06vCakFCBYlaydf5ohMjy-gYnLO8fsfd8V5QD0LbPLDzy22viUizptfOKU4luZrNtPU7aGmw/s320/IMG_20170302_123000.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTaaP2z_mWfaIs08WfT54LPlsrPAmooqxl09aA2nlb9oVroVlPbaCJJdT7MeSl-8Hlb5Db_DINO16huSFVqOCN2rSXlxric_Q1dk_lyZfHriL3WELH_f1pL4r6911laE8n7UgU7d7IyIY/s1600/IMG_20170301_173828.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTaaP2z_mWfaIs08WfT54LPlsrPAmooqxl09aA2nlb9oVroVlPbaCJJdT7MeSl-8Hlb5Db_DINO16huSFVqOCN2rSXlxric_Q1dk_lyZfHriL3WELH_f1pL4r6911laE8n7UgU7d7IyIY/s320/IMG_20170301_173828.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFdzG74J-_1tCgXGI3n9soP6HXKQ9_Gz8bxGlQQjPxf83vPrVRZZ5cihBq7ib2vLTQo-G-pe97yPy0K9ZdSg_QvKPOZxfx8Dh_WEv69ShH57bEzt1w9fCGw497fFKN6mvVAkhxaDKPoKI/s1600/IMG_20170301_153047.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFdzG74J-_1tCgXGI3n9soP6HXKQ9_Gz8bxGlQQjPxf83vPrVRZZ5cihBq7ib2vLTQo-G-pe97yPy0K9ZdSg_QvKPOZxfx8Dh_WEv69ShH57bEzt1w9fCGw497fFKN6mvVAkhxaDKPoKI/s320/IMG_20170301_153047.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzCcFwXJr_EaQx1Yt0dc50vf5lhKwgVlyWNkqeaF4Tui2WsW_-NLjsduweiko79tXDdqgW-n0j3x7mvPFyV7arc76rKb1_TrpMKXVsXgJV1hwwdfGkea7psRn7_FcKmQp5mQCBM_EZcRw/s1600/IMG_20170301_155613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzCcFwXJr_EaQx1Yt0dc50vf5lhKwgVlyWNkqeaF4Tui2WsW_-NLjsduweiko79tXDdqgW-n0j3x7mvPFyV7arc76rKb1_TrpMKXVsXgJV1hwwdfGkea7psRn7_FcKmQp5mQCBM_EZcRw/s320/IMG_20170301_155613.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGX2q0kz-7w0kg54K7BLNSx8_7zIW-G7PqX0MapzFUobgdSKlWl0zOygl-Byqy_luL4B7VwiBfhusyWcOOwbQWikDeYO7wqUOE_SY9LA7BYqE5Hl4Zr4mkdnE86vGwuyUhMUuCQxfwwJ0/s1600/IMG_20170228_144317.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGX2q0kz-7w0kg54K7BLNSx8_7zIW-G7PqX0MapzFUobgdSKlWl0zOygl-Byqy_luL4B7VwiBfhusyWcOOwbQWikDeYO7wqUOE_SY9LA7BYqE5Hl4Zr4mkdnE86vGwuyUhMUuCQxfwwJ0/s320/IMG_20170228_144317.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3n-KPP3oMeeksuIX1DCCf2idOXwjS6SbqcOwesQ3TabT1udMc4-mTf2zmYFbPc5gi6sNKJ5uavTrOLVHRkkUuci16n2uUny_LsqlNJL3T2iQvAW8Jjtwrvrq2Hzg21EnkRFC4EdsyVCw/s1600/IMG_20170228_133408.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3n-KPP3oMeeksuIX1DCCf2idOXwjS6SbqcOwesQ3TabT1udMc4-mTf2zmYFbPc5gi6sNKJ5uavTrOLVHRkkUuci16n2uUny_LsqlNJL3T2iQvAW8Jjtwrvrq2Hzg21EnkRFC4EdsyVCw/s320/IMG_20170228_133408.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO1Ik2NNEHu8Ej67WwCnaAML63eE7ppiJdXjkBpL-JGhKOKJc7adYRb47kzJ9oElAycoYrWVJczmfCmeSxknZ9qZyQp_I1Sm3kXI6y7wDz1ANqlT3yQakmHnlBg7so5xq6a6YEtK-7vNI/s1600/IMG_20170226_133648.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO1Ik2NNEHu8Ej67WwCnaAML63eE7ppiJdXjkBpL-JGhKOKJc7adYRb47kzJ9oElAycoYrWVJczmfCmeSxknZ9qZyQp_I1Sm3kXI6y7wDz1ANqlT3yQakmHnlBg7so5xq6a6YEtK-7vNI/s320/IMG_20170226_133648.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHTHhAGWrYCBe9bAPleuv4yKDntlyN40xobDB33-Zkl17xc6Wiqv-gdlP2wkFwJAzN9fKf4-wFY56DEaBT1L6x8l71bUn5UyQEy0GVl6fdX4fU7DYcU1AdmWYwnH16VHzAfxih6_B5jZw/s1600/IMG_20170225_200046.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHTHhAGWrYCBe9bAPleuv4yKDntlyN40xobDB33-Zkl17xc6Wiqv-gdlP2wkFwJAzN9fKf4-wFY56DEaBT1L6x8l71bUn5UyQEy0GVl6fdX4fU7DYcU1AdmWYwnH16VHzAfxih6_B5jZw/s320/IMG_20170225_200046.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDDtMZmp2TahYduh1aPsMZZ2ZiwR8dPwfgtsE0stX4UdEbQHE4-EmKZ2-aOPCcAJjO_7BXICP60dwN4TY07XFMqQpD4hWuMcavVo8vMU4CwtkBeUHxEaimxg8yMQ-vKBwYMyXUcWJp0-8/s1600/bDSC_5848.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDDtMZmp2TahYduh1aPsMZZ2ZiwR8dPwfgtsE0stX4UdEbQHE4-EmKZ2-aOPCcAJjO_7BXICP60dwN4TY07XFMqQpD4hWuMcavVo8vMU4CwtkBeUHxEaimxg8yMQ-vKBwYMyXUcWJp0-8/s320/bDSC_5848.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDCzytWUjMTLu3eEkXxRQZNeJ01Hmo7lrQLrnDf0_1YxkFlMcYU1tmpR3FRr_KHgkR2tfFK4pTLyA4NxfnXOO-nTQ-2ec7hphc5iQdpjLyfWlqdIN1d_CTKf_CnX1dKLUdd7rRE-lcy2s/s1600/bDSC_5928.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDCzytWUjMTLu3eEkXxRQZNeJ01Hmo7lrQLrnDf0_1YxkFlMcYU1tmpR3FRr_KHgkR2tfFK4pTLyA4NxfnXOO-nTQ-2ec7hphc5iQdpjLyfWlqdIN1d_CTKf_CnX1dKLUdd7rRE-lcy2s/s320/bDSC_5928.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJrhLGYAgoeQ78N-kqYPkghzuh4mRMdV-maxTfPm_NWlAxtoSps9OJo9CmEOpQrIj3BR3Unpi66v4Qa2Mt3kT9NgDO9YqlAf-MfkVWof45MWPrsMCcGd7q3B5Dhq1LatLjLSbCyWD89y4/s1600/bDSC_5941.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJrhLGYAgoeQ78N-kqYPkghzuh4mRMdV-maxTfPm_NWlAxtoSps9OJo9CmEOpQrIj3BR3Unpi66v4Qa2Mt3kT9NgDO9YqlAf-MfkVWof45MWPrsMCcGd7q3B5Dhq1LatLjLSbCyWD89y4/s320/bDSC_5941.jpg" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rX000G9gctOQsdouBzRP_S9a8-7Wc5AQqAWRbNzaMMHGm1WHK7gObEfeY0V4-wkSEie3LNelkyuVnGGme3n_yjXOJgpR9bmp7oLqg7Zruwuts1f7ReOAOa7oijeuRnjczXVtXNLaJ-M/s1600/blDSC_5361.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="231" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rX000G9gctOQsdouBzRP_S9a8-7Wc5AQqAWRbNzaMMHGm1WHK7gObEfeY0V4-wkSEie3LNelkyuVnGGme3n_yjXOJgpR9bmp7oLqg7Zruwuts1f7ReOAOa7oijeuRnjczXVtXNLaJ-M/s320/blDSC_5361.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWuTAHud9cU6w8PT4X6OjdQ1UfRhrAGBJ2wjMmlVByhyphenhyphenuf8r3e8slCbPFS2wCm1pzRhoz5ratYA2EoMc3w9o6sy_1jbQJYFZznd8oHpPsGlRB0YfRnfIrRjki3osjbeamPIqTty90kJsQ/s1600/IMG_20170211_160024.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWuTAHud9cU6w8PT4X6OjdQ1UfRhrAGBJ2wjMmlVByhyphenhyphenuf8r3e8slCbPFS2wCm1pzRhoz5ratYA2EoMc3w9o6sy_1jbQJYFZznd8oHpPsGlRB0YfRnfIrRjki3osjbeamPIqTty90kJsQ/s320/IMG_20170211_160024.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIXNSj_0ssF2fSVWASxR4FGKFwhAVa6k_H5PDBi-l5oW00-zDnjGgpBCKZnLJJ3sP1g2PZ-fE6f27T84htVWxrpRCT2txUHGJEpVNA-P2-sCYooN1AkWDt3jtOgZf6JbZXNxXSrfplEek/s1600/IMG_20170209_072525.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIXNSj_0ssF2fSVWASxR4FGKFwhAVa6k_H5PDBi-l5oW00-zDnjGgpBCKZnLJJ3sP1g2PZ-fE6f27T84htVWxrpRCT2txUHGJEpVNA-P2-sCYooN1AkWDt3jtOgZf6JbZXNxXSrfplEek/s320/IMG_20170209_072525.jpg" width="240" /></a></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
<br /></div>
<div>
<br /></div>
</div>
</div>
</div>
</div>
</div>
bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com18tag:blogger.com,1999:blog-2824559967983244468.post-31885376769568102712017-01-27T18:20:00.000-08:002017-01-27T18:20:08.192-08:00A #FightingForMaya Update - Infusion #9<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh-R-Nv6eg9XNxBwA8Jg88KOrPHhsfkAdFBxVRARLXUF-vZN73C_NRBJol7N185KRJ8_1WTyN1r26AGlaY6BwuFiRLAKnde4hieFAgUJqJQvJOAns7EJF9k5p9A_kwBTUZgx_8_pyQ674/s1600/IMG_20170125_140942.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh-R-Nv6eg9XNxBwA8Jg88KOrPHhsfkAdFBxVRARLXUF-vZN73C_NRBJol7N185KRJ8_1WTyN1r26AGlaY6BwuFiRLAKnde4hieFAgUJqJQvJOAns7EJF9k5p9A_kwBTUZgx_8_pyQ674/s640/IMG_20170125_140942.jpg" width="640" /></a></div>
<br />
<br />
Yep, you read that right... Maya has completed Infusion #9... Woooohoooo<br />
<br />
As you can imagine, we are so thankful and fortunate to have this option. It is our sincere hope that this treatment is made available for all families and approved by the FDA here in the states (and in Europe) as soon as possible. <br />
<br />
Maya is an awesome patient, her only complaint is that she gets a little bored at the hospital -- she has explored the outer reaches of Instagram, Netflix and Amazon Video ;-)<br />
<br />
Many of you ask if Maya is getting better. <br />
<br />
From a purely scientific perspective that is a hard question to answer. Since Maya's form of this disorder is so rare, and it has never been studied, no one really knows at what rate it will naturally progress. We just know that it will progress. Over time, if Maya does not progress or if she gains back functionality, then we know that she is getting better. The doctors are specifically looking for improvements in walking and speech. Slowly, we are seeing the precursors to improved walking and speech.<br />
<br />
From a non-scientific perspective, we think that it is helping Maya. Usually it is people who haven't seen her in awhile, they will comment that she seems stronger, more engaged, her walking (with aid) is more confident or her speech is easier to understand.<br />
<br />
Personally, I notice that her core strength is stronger and she is more confident and willing to try new things.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiugMybAQ7E8rUrnFMAhAWXtnSJZEULCfPfdmhfeCxXeMUc60pzMKxvQItRgdWKcTKbdHmCaE8jcXnfmILq2FAIE6L3bB_k1SW8ngy7qIxzN2zlGDIm_JYacx0RhMsEThT-cuS40jHcVsQ/s1600/signal-2017-01-27-175434.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiugMybAQ7E8rUrnFMAhAWXtnSJZEULCfPfdmhfeCxXeMUc60pzMKxvQItRgdWKcTKbdHmCaE8jcXnfmILq2FAIE6L3bB_k1SW8ngy7qIxzN2zlGDIm_JYacx0RhMsEThT-cuS40jHcVsQ/s400/signal-2017-01-27-175434.jpg" width="225" /></a></div>
<br />
Maya has taken to indoor rock climbing. She starts with an instructor on Sunday.<br />
<br />
In my mind, the new confidence is an indication that she is feeling better. Again... these are my non-scientific observations. If you ask Maya, she will say that she doesn't feel as tired.<br />
<br />
It is our intention that Maya will once again walk, climb, hike, dance, run and play with reckless abandon.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCJm4PTMIwUdFzjNIBP2H-dgL5KkdOg1U4f8XY_LiQH4zlFMDUoYnZqraJ_3-mJCRHpbebRycao0Hu-uBqS-m6-xyfOLW3WKdwcl0wrpK8oWPjpS6dNwPHBi4K6-d4tY0CJ4IuOvTucGY/s1600/IMG_20170125_081014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCJm4PTMIwUdFzjNIBP2H-dgL5KkdOg1U4f8XY_LiQH4zlFMDUoYnZqraJ_3-mJCRHpbebRycao0Hu-uBqS-m6-xyfOLW3WKdwcl0wrpK8oWPjpS6dNwPHBi4K6-d4tY0CJ4IuOvTucGY/s320/IMG_20170125_081014.jpg" width="320" /></a></div>
<br />
Sometimes we like to give Dr. Em a tough time. Maya is her oldest and tallest (5'4") patient in the program.<br />
<br />
After hours of research, we've discovered that a couple of rounds of PieFace are a great way to break up the day. We love this team at Nationwide Children's Hospital.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/_NL1FPGd70U/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/_NL1FPGd70U?feature=player_embedded" width="320"></iframe>.</div>
<br />
<br />
We've also started a tradition of watching Jimmy Fallon's lip synch battles at the end of each infusion... Its good to celebrate each success with a hearty laugh. Below is Maya's favorite (we hope it makes you laugh).<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/4LvMeYEwWGQ/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/4LvMeYEwWGQ?feature=player_embedded" width="320"></iframe></div>
<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-41239717054109002932016-12-30T14:03:00.002-08:002017-01-03T17:12:57.352-08:00Pioneer(s)<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTZVi01iYAdFmZODSoJ8D4G_o4zpido-4cbxngW-5r0hekRg0DuQXtRc5Zl5BRLQXws8ze1DOHWYM65_PwioySt3ixdME4jF6jEluWIQNJa12ZBrkyAeJklBI9V4KFLO3Dj3RAdiv9plk/s1600/IMG_20161214_163354.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTZVi01iYAdFmZODSoJ8D4G_o4zpido-4cbxngW-5r0hekRg0DuQXtRc5Zl5BRLQXws8ze1DOHWYM65_PwioySt3ixdME4jF6jEluWIQNJa12ZBrkyAeJklBI9V4KFLO3Dj3RAdiv9plk/s400/IMG_20161214_163354.jpg" width="400" /></a></div>
<br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">During our visit to Columbus for Maya's 5th infusion, Dr. Em sat on Maya's bed and in a very stoic tone, told Maya that she was a "Pioneer". I cant help but think back to that day when I signed Maya's medical consent forms, I'm certain there was not a section called "Pioneer". Six plus pages of risks and horribles, in very plain English, but nothing about Maya agreeing to be a "Pioneer".</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">Despite Dr. Em's proclamation, and there is some truth to it, I'd argue that there are so many other Pioneers that continue to step forward to battle Batten Disease. At the risk of forgetting to thank others, I'd like to take a moment and thank the people of Columbus, Ohio for stepping forward in the battle against Batten Disease.</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">From the brave world class medical care at </span></span><span style="background-color: white; color: #192024; font-family: "georgia" , serif;">Nationwide Children's Hospital, to the unparalleled support of the employees of Nationwide Insurance, to sharing Maya's story, to embracing those who travel to Columbus for treatment, to bake sales, to providing us with a home away from home, to loving Maya and showering her with support, the people of Columbus have embraced our family, and many other Batten families, providing so many with unheralded love and support. </span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">For this, I am eternally thankful.</span></span><br />
<br />
-----<br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;">You know, its kind of funny. A friend recently told me that she and her friends were really looking forward to my next post. I kind of looked at her and thought, "You and me both, sister."</span><br />
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;"><br /></span><span style="background-color: white; color: #192024; font-family: "georgia" , serif;">Seriously, there is so much to say, and so few words.</span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;">I keep looking back at all of the pictures from the last 7 months and I just shake my head in amazement. We've blown past our #FightingForMaya goal for year 1 and raised over $100k. In under 7 months, we have funded the first two years of the four year research project at Texas Children's Hospital. THANK YOU!!!</span><br />
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;"><br /></span>
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;">My heartfelt dream is that soon, when a parent receives this devastating diagnosis, their doctor will write a prescription and say, "I've heard of this disorder. Here is a course of treatment for your child." </span><span style="color: #192024; font-family: "georgia" , serif;"> Ambitious, perhaps naive, but possible. Just ask my daughter, the "Pioneer".</span><br />
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;"><br /></span>
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;">---</span><br />
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;"><br /></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">How is Maya? Maya is a trooper. She endures the pokes, injections, questions, new faces, old faces, security at the airport, boredom and so much more with a smile.</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">During the toughest moments, as she struggles with this disorder, she will say "I don't want people to look at me". </span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">Its hard for her. So very hard, but she is doing an amazing job. We remain very hopeful that this treatment will stop the progression and restore some of the functionality that Maya has lost. We remain vigilant. </span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">--</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">Below are a couple of recent pictures and a wonderful video of support from Billy Zabka and Ralph Macchio. Thank you Steve, Billy and Ralph.</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">As always, thank you for reading and for your love and support.</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;">#FightingForMaya</span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><a href="http://www.fightingformaya.com/">www.fightingformaya.com</a></span></span><br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9AS76dshwk_xoyDddRu3Px3kmiZxTCREaOyyxso5pmRsKgJuKDsAK3AcWKTL-TsOa5gCptSCw9_dfHfNPkQEyvtU-FnvRKac0U2Nz_cPcKO6ZvD7R9G4pv7m_EdQfUM7GyN14K1pZWAs/s1600/signal-2016-11-04-171943.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9AS76dshwk_xoyDddRu3Px3kmiZxTCREaOyyxso5pmRsKgJuKDsAK3AcWKTL-TsOa5gCptSCw9_dfHfNPkQEyvtU-FnvRKac0U2Nz_cPcKO6ZvD7R9G4pv7m_EdQfUM7GyN14K1pZWAs/s400/signal-2016-11-04-171943.jpg" width="302" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFL9fxS4JvbmaDVSMXSVnZXo3ntZ1CRbyP3XBYGIqqlxXmcsZEnQeBbl-l5de0swTNUKo9kfxNlKkNloWOc71TzOt7UXRTr8IrgCyNXhOl7M6doh_cvXu99EosaUj7rWj1vHOZXYFFrj8/s1600/signal-2016-12-15-195553-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFL9fxS4JvbmaDVSMXSVnZXo3ntZ1CRbyP3XBYGIqqlxXmcsZEnQeBbl-l5de0swTNUKo9kfxNlKkNloWOc71TzOt7UXRTr8IrgCyNXhOl7M6doh_cvXu99EosaUj7rWj1vHOZXYFFrj8/s400/signal-2016-12-15-195553-1.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpw20yMnh_d_6R0ae0PW0IkfDU4Bh4EQEZnB2cLsG1i5REbPUSlF6OSc8Pku30COkSLrSWsd8U_vsepC8a0qHUtRS26MDEEw0VoywR-D3zYEPsfNeDbfaxJLrTyHnjyrWXErP0ustGYzE/s1600/signal-2016-12-30-153658.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpw20yMnh_d_6R0ae0PW0IkfDU4Bh4EQEZnB2cLsG1i5REbPUSlF6OSc8Pku30COkSLrSWsd8U_vsepC8a0qHUtRS26MDEEw0VoywR-D3zYEPsfNeDbfaxJLrTyHnjyrWXErP0ustGYzE/s400/signal-2016-12-30-153658.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGKjuvm_ezFXI4YGXSUPi9EN3k0aeFwT51wAXA_ZUzEfg3s55AeASpz43QskzVwP3Fublvp7jqtXzqNcNVqGkKZY4P7wW-8w9UDchL13nBU3x68ouldoSbi_Pj17xr839dlfAmHxIuvZo/s1600/signal-2016-12-30-153753.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGKjuvm_ezFXI4YGXSUPi9EN3k0aeFwT51wAXA_ZUzEfg3s55AeASpz43QskzVwP3Fublvp7jqtXzqNcNVqGkKZY4P7wW-8w9UDchL13nBU3x68ouldoSbi_Pj17xr839dlfAmHxIuvZo/s400/signal-2016-12-30-153753.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8OwVPhiu0IK_C12_Go_qYN1AEBCkZwFWCcRPfnhlVHDp5fIMjBbs9ZMdNj3Ja_l4MvOrODQX-tnhaL-sSkMPUuX4Iw_ERHPwhOVQG1D_qnVRCB-Ptg2MSBYjDMrCXqKNq3Uocv9m4GO0/s1600/signal-2016-12-30-153820.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8OwVPhiu0IK_C12_Go_qYN1AEBCkZwFWCcRPfnhlVHDp5fIMjBbs9ZMdNj3Ja_l4MvOrODQX-tnhaL-sSkMPUuX4Iw_ERHPwhOVQG1D_qnVRCB-Ptg2MSBYjDMrCXqKNq3Uocv9m4GO0/s400/signal-2016-12-30-153820.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzBCeKD5K8hbE3O5TCPHoS3744IUhWai08A1Bl2SbEe0Z4Sxcu_-MIXpt950ABFmf6b2y0aNsINYKmEuZqCJLce2PyX_zzN5kKTuK7Au191A-cgHchBFQ51qigKbRh8RCG_U6Z8T5Md7k/s1600/signal-2016-12-30-153840.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzBCeKD5K8hbE3O5TCPHoS3744IUhWai08A1Bl2SbEe0Z4Sxcu_-MIXpt950ABFmf6b2y0aNsINYKmEuZqCJLce2PyX_zzN5kKTuK7Au191A-cgHchBFQ51qigKbRh8RCG_U6Z8T5Md7k/s400/signal-2016-12-30-153840.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIeXRPBatdjRLUBwNxJDzxADMEiiV19GN0sa-wNx33KEUwREvUMF6PpBtXbFTJlgPcbFE-RR2FU2vEk3fiUiuO3jKmtA1vLJ08XRwb6QyWPCYco-cb3Gn9SaDJ4sULEiCxXkio2A3uLFE/s1600/signal-2016-12-30-154103.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIeXRPBatdjRLUBwNxJDzxADMEiiV19GN0sa-wNx33KEUwREvUMF6PpBtXbFTJlgPcbFE-RR2FU2vEk3fiUiuO3jKmtA1vLJ08XRwb6QyWPCYco-cb3Gn9SaDJ4sULEiCxXkio2A3uLFE/s400/signal-2016-12-30-154103.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDCAssb_rt-JjV5SAgS4woP3Chmq75erRWaQCF-WKJqLLRSJ__XXJsElHCfd42p0mY9wWQkc8XNo82U_5kwshu5UsSXswGB1EdTp_NrBL4fuVz4p7xTy8K_ieJL6CfZHpPaNng2QV6xBo/s1600/signal-2016-12-30-154131.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDCAssb_rt-JjV5SAgS4woP3Chmq75erRWaQCF-WKJqLLRSJ__XXJsElHCfd42p0mY9wWQkc8XNo82U_5kwshu5UsSXswGB1EdTp_NrBL4fuVz4p7xTy8K_ieJL6CfZHpPaNng2QV6xBo/s400/signal-2016-12-30-154131.jpg" width="300" /></a></div>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXoRbCLiitGucSsCps5h5TAqvdXyUaTs4Uu3tkyIzdNXlXuKL-3IGhOtkdyO75RXV54nIP0rv1j-07-5azK3jAeRGQtaWYv0JeKb70MRtjJlCCQYbi3zerk5gHrhk1Y_4bluz87NaQnJ4/s1600/IMG_20161229_082750.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXoRbCLiitGucSsCps5h5TAqvdXyUaTs4Uu3tkyIzdNXlXuKL-3IGhOtkdyO75RXV54nIP0rv1j-07-5azK3jAeRGQtaWYv0JeKb70MRtjJlCCQYbi3zerk5gHrhk1Y_4bluz87NaQnJ4/s400/IMG_20161229_082750.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaNJtDiK7Ad-gLc-KzeMMDBW9XFCFp44RZCHnxp5TFGbED1nvSu3cyAaxF_eiEnG_0T5cbQf4Bwvj11dfrEqWDmplimglVXkYBXV2bw4SPOOCzzrt_UtWycWlm1OzOtpisIgf9X68vkNc/s1600/IMG_20161216_113414.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaNJtDiK7Ad-gLc-KzeMMDBW9XFCFp44RZCHnxp5TFGbED1nvSu3cyAaxF_eiEnG_0T5cbQf4Bwvj11dfrEqWDmplimglVXkYBXV2bw4SPOOCzzrt_UtWycWlm1OzOtpisIgf9X68vkNc/s400/IMG_20161216_113414.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6RJORyg-ZiD-BF8jIq1MmQhJModkT3728gSFOLH_J538ABAnDSFJMf7mnODIjxzWJ3IL6_QgMfQpyQj9gH30QPv02XjeBCcEI76dU3SCqU0P-2sKBxphj927kg3L0MjLB-jSRrMESHpk/s1600/IMG_20161227_175130.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="296" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6RJORyg-ZiD-BF8jIq1MmQhJModkT3728gSFOLH_J538ABAnDSFJMf7mnODIjxzWJ3IL6_QgMfQpyQj9gH30QPv02XjeBCcEI76dU3SCqU0P-2sKBxphj927kg3L0MjLB-jSRrMESHpk/s400/IMG_20161227_175130.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVVPxKGaSJFXcLlo-p5tbODz95zmlQzn13ZzEKbQ8LHUixOCI6ISpp36EeX3d5zWBKup8pa3jiCuFtAPs92cw9USTizuVqp7geKstDfybas-mfhYfBJ_66nKHS5atYPP-TyRox9wRK8Yc/s1600/FB_IMG_1482085278777.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVVPxKGaSJFXcLlo-p5tbODz95zmlQzn13ZzEKbQ8LHUixOCI6ISpp36EeX3d5zWBKup8pa3jiCuFtAPs92cw9USTizuVqp7geKstDfybas-mfhYfBJ_66nKHS5atYPP-TyRox9wRK8Yc/s400/FB_IMG_1482085278777.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzvnhpX7KRqlbXUwGyHaRAskO6dtaqCLqMBo-ErgaaE_KKANCdDu4-ZjIJERDokmIclBxUwkwXj_xdL1piMB4NcisQgMSOQCdy6zlp-yJSugNVPJ79pqwiOyWduphSxLOzAV_wFIs66ko/s1600/IMG_20161214_144835.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzvnhpX7KRqlbXUwGyHaRAskO6dtaqCLqMBo-ErgaaE_KKANCdDu4-ZjIJERDokmIclBxUwkwXj_xdL1piMB4NcisQgMSOQCdy6zlp-yJSugNVPJ79pqwiOyWduphSxLOzAV_wFIs66ko/s400/IMG_20161214_144835.jpg" width="296" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyzM4shC_gdSXebydW5aOkOV8cK9odMIH21mzJjsI1uvslOt3UPcmFwq8Ve29baMC95D3GBXAJdYGwcEt61fwW87ryp5qmkoohIYe0Ti1OGUEBKXdeBEIudnRF_Fy50FwePw9nx0kdDx8/s1600/IMG_20161211_133800.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyzM4shC_gdSXebydW5aOkOV8cK9odMIH21mzJjsI1uvslOt3UPcmFwq8Ve29baMC95D3GBXAJdYGwcEt61fwW87ryp5qmkoohIYe0Ti1OGUEBKXdeBEIudnRF_Fy50FwePw9nx0kdDx8/s400/IMG_20161211_133800.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/0H91h-KaEtk/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/0H91h-KaEtk?feature=player_embedded" width="320"></iframe></div>
<span style="background-color: white; color: #192024; font-family: "georgia" , serif;"><br /></span>
<br />
<span style="color: #192024; font-family: "georgia" , serif;"><span style="background-color: white; font-size: 19px;"></span></span>bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com1tag:blogger.com,1999:blog-2824559967983244468.post-90689383393008619682016-11-13T15:58:00.000-08:002016-11-18T18:48:47.162-08:00A #FightingForMaya Update<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6W_7xI4-FEhCgPHpOzuuDlT7E4nmImPTnDt8ONzbNcga4Ph4uxF9Nprft5ydO6OLtWLTlXMuWoQYu-PD8eisyVRlr_v6i4eztNdN-qkhu1Ry-VtwlqlEOUQ1yEhBKyZpBQhAbiFknyaE/s1600/14947960_10210218554407803_8687644175338330546_n+%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6W_7xI4-FEhCgPHpOzuuDlT7E4nmImPTnDt8ONzbNcga4Ph4uxF9Nprft5ydO6OLtWLTlXMuWoQYu-PD8eisyVRlr_v6i4eztNdN-qkhu1Ry-VtwlqlEOUQ1yEhBKyZpBQhAbiFknyaE/s640/14947960_10210218554407803_8687644175338330546_n+%25281%2529.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;"><b>#FightingForMaya</b></span></td></tr>
</tbody></table>
<br />
<br />
When Maya was born, she had what we believe was an unrelated condition called gastroschisis, that required her to have surgery immediately after birth and spend five weeks in the NICU. She was diagnosed during the 19th week of pregnancy and Suzette and I braced for her challenging, yet not impossible arrival.<br />
<br />
I remember that her birth day was hectic. We had what we thought was a routine check-up with the obstetrician in the morning, however, we were told that Maya was entering into distress and would need to be delivered later that day. Because of her unrelated condition, Maya was delivered by c-section and was immediately whisked away to be evaluated by the pediatricians before her surgery. This part wasn't a surprise as Suzette and I had planned that I would accompany Maya to the surgery while Suzette went to post-op recovery.<br />
<br />
As the doctors and nurses wheeled Maya to surgery, I realized that despite all of my planning, I hadn't planned for the reality that because of the c-section and need for immediate surgery, Maya had been born and Suzette hadn't seen her (Suzette heard her cry, but had not seen her). A wave of panic hit me and I begged the doctors and nurses to not take Maya to surgery until I had returned with Suzette. I then took off running down the halls of the hospital, trying to find Suzette's room and someone to help me get her to Maya.<br />
<br />
After much begging, I convinced a young intern to get Suzette out of bed, into a wheelchair and back to Maya. Luckily we found Maya, in an incubator and headed to the operating room. Her surgeon, greeted us with a hearty smile and quickly agreed to give Suzette a few moments with Maya. As I stood by the surgeon, and retold my tale of running around the hospital like a madman, he cracked a huge smile. He then shared a bit of wisdom, and said, "There is nothing like the bond between a father and his daughter."<br />
<br />
Little did I know.<br />
<br />
****<br />
<br />
At some point, many of us parents in the rare disease community swear a little oath. You have that moment, perhaps after your child has regressed a little too far or perhaps when you question why your family has been tasked to bear such a burden. You silently swear to yourself, that no matter what happens to your child, that you will find some way to make it easier for those families that follow in your footsteps. In some ways, I think that I made the oath, because no matter what happens (good or bad), I don't want any of this to be in vain.<br />
<br />
Last month, after we returned to our hotel room in Columbus, recovering from the 48hrs in the hospital for Maya's first infusion, Suzette, Maya and I sprawled out on couches, beds and chairs. We all just needed a couple of hours to recover. I was staring at my phone, catching up on email and I came across a message titled "SCAR7 Diagnosis". It was a note from a mom who had a 14 year old son who was diagnosed with SCAR7. His geneticist had found our blog and passed along a printout and links.<br />
<br />
I immediately gave the mom a call and during a thirty minute conversation, shared two and a half years worth of knowledge and understanding. I then followed up with articles and introductions to Maya's doctors. <br />
<br />
This young boy, represents our 21st person who is similar to Maya. However, he is the first (and hopefully not the last) to have found us due to our #FightingForMaya work.<br />
<br />
That moment and conversation meant a lot.<br />
<br />
<br />
****<br />
<br />
As of this week:<br />
<br />
- We have sold over <b>900</b> #FightingForMaya shirts;<br />
<br />
-Raised over <b>$13,000</b> from shirts alone;<br />
<br />
-Over <b>600 </b>people have either made a contribution directly to the <a href="https://secure2.convio.net/tchos/site/Donation2;jsessionid=45F0F726ACE138F3BCFAD71C1A4080D9.app222b?1901.donation=form1&df_id=1901&mfc_pref=T" target="_blank">SCAR7 research project at Texas Children's</a> or <a href="https://www.booster.com/fighting-for-maya" target="_blank">bought a shirt</a>;<br />
<br />
-The FightingForMaya blog has been viewed over <b>18,000 </b>times;<br />
<br />
-We are six thousand dollars shy of hitting our year end goal of raising <b>$100,000 </b>of the $200,000 for the SCAR7 research project at Texas Children's Hospital.<br />
<br />
<br />
****<br />
<br />
Our year end ask, is that you consider making <a href="https://secure2.convio.net/tchos/site/Donation2;jsessionid=45F0F726ACE138F3BCFAD71C1A4080D9.app222b?1901.donation=form1&df_id=1901&mfc_pref=T" target="_blank">a donation to the SCAR7 research project at Texas Children's</a>. Be this your first, second or tenth, we ask that you make another donation to help push us over the half way mark. This research project is so important in developing a targeted treatment for SCAR7 and expanding the understanding of this disorder. We are close!!!<br />
<br />
****<br />
<br />
Finally, I want you to know that Maya is doing well. We are very fortunate to have her in the program at Nationwide Children's Hospital, Columbus and we make the trip every two weeks for her infusions. Based on the published data, we can reasonably expect the progression to be slowed or stopped. We hope and pray that over time, Maya will see some improvement.<br />
<br />
As I have written many times, Maya (and our family have been showered with love and support). From tiny to mighty gestures, we have been so very fortunate.<br />
<br />
In closing, we want to share a beautiful message that Maya received earlier this year (see below video). It is one of many heartfelt messages (and we may share more), but we thought that we would share this one at this time. Thank you, Steve and Chris.<br />
<br />
Thank you for reading and for your continued love and support,<br />
<br />
#FightingForMaya<br />
<a href="http://www.fightingformaya.com/">www.fightingformaya.com</a><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/nXwN8kUk3q4/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/nXwN8kUk3q4?feature=player_embedded" width="320"></iframe><br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com1tag:blogger.com,1999:blog-2824559967983244468.post-53463286210650668882016-10-20T14:37:00.000-07:002016-10-20T14:37:19.277-07:00Feeling Thankful<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWGviPNG_v0glrcZ847Rb4tiYxpIxXtt5Jxdm4vP6nnzfF2_IopjpQA0nLNFsp33R2YIXSB-f-1oGWpXa6txTjxxOL1mXtEin7eUHdGeSELTxpq5Un1lhdR6XOlCEC-9PKSTrCEWwd1U/s1600/IMG_20160927_070103.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWGviPNG_v0glrcZ847Rb4tiYxpIxXtt5Jxdm4vP6nnzfF2_IopjpQA0nLNFsp33R2YIXSB-f-1oGWpXa6txTjxxOL1mXtEin7eUHdGeSELTxpq5Un1lhdR6XOlCEC-9PKSTrCEWwd1U/s640/IMG_20160927_070103.jpg" width="480" /></a></div>
<br />
The first person I told was a dad I know. His family is one of too many that have made the ultimate sacrifice to Batten Disease. I let him know that Maya received her first infusion today. I shared with him how surreal it was to see the nurse walk into the room with the replacement enzyme that Maya needs. He is a friend I look up to and respect. I wanted to convey how thankful I was for his friendship, his family's sacrifice and their unparalleled dedication in working to save as many people as possible from the horror that is Batten Disease.<br />
<br />
If you are confused, its okay. You see, about a month ago, we were told that Maya had been accepted into an expanded use (compassionate use) program for an Enzyme Replacement Therapy. I won't go too much into the therapy, but you can read about it <a href="http://www.biomarin.com/products/clinical-trials/cerliponase-alfa/" target="_blank">here</a>. <a href="http://www.raredr.com/news/biomarins-ert-cln2" target="_blank">The results thus far have been very promising </a>in terms of this therapy slowing the progression in kids with the classic form of the disorder.<br />
<br />
In order to participate in this program Maya had to relocate to Columbus, Ohio for four weeks. She will need to return every two weeks. Suzette and I have commuted back and forth to be with Maya and to spend time with the boys back home.<br />
<br />
Right now, I'm not up for writing much about the last couple of weeks Except to say that I'm exhausted. However, there are two important things that I want to get out there: <br />
<br />
First, the FDA is set to review this therapy for approval in early 2017. I can't emphasize enough how important this review and approval will be for so many families. Words can't capture it. <br />
<br />
Second, I'm ridiculously thankful. From my parents who jumped in at a moments notice to care for the boys during this last couple of weeks, to our friends who delivered meals, provided transportation, visited Maya, sent gifts, checked in on us constantly, worked untold magic in the background, to the insanely wonderful people of Columbus, Ohio who have shown us what makes the midwest so beautiful. I can't even begin to explain how much people have opened their hearts and supported our family through this waypoint. (I will post more later about the great people of Columbus)<br />
<br />
For now, that's about all I have to share. Maya is good and in great spirits. This is a monumental milestone for us, but we (i.e., #FightingForMaya) still have work to do.<br />
<br />
Thank you for your continued love and support.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoziRwe9tS3yB9Nj8PqvGMl5ImlgjI7GAaQS9I5-L5Za0tBqmqDPra64ztT47EvXaX6AhTu0IeQlmsEHszJj_I2WUqCU0qDwQyZ8xQrITzSZ1CoaiOyAz88K_yIbRfiaNQ5KLAQUdEplg/s1600/IMG_20161001_121252.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoziRwe9tS3yB9Nj8PqvGMl5ImlgjI7GAaQS9I5-L5Za0tBqmqDPra64ztT47EvXaX6AhTu0IeQlmsEHszJj_I2WUqCU0qDwQyZ8xQrITzSZ1CoaiOyAz88K_yIbRfiaNQ5KLAQUdEplg/s400/IMG_20161001_121252.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMipEs9aSjkil749R4HL3OnNJONIs7P_ZCsREL3T7hRMGekJiApmTpx51PDoyqCJbIJIr3zGIiJB_51Logt3Z2eBTPNbYZ6Z4nxS6RqUQdZa13p6UAR_b_KS0An2mJqSyxBSu-Nd-wMB0/s1600/IMG_20161005_120954.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMipEs9aSjkil749R4HL3OnNJONIs7P_ZCsREL3T7hRMGekJiApmTpx51PDoyqCJbIJIr3zGIiJB_51Logt3Z2eBTPNbYZ6Z4nxS6RqUQdZa13p6UAR_b_KS0An2mJqSyxBSu-Nd-wMB0/s400/IMG_20161005_120954.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpprCwhZzns2wI13KLzFsmajLDpu6wFDoWcioDMmOSpqe8l6lmSXT7ap6XiiQXfBV_D2pLTVj1M50I46-iJFfOoEagZuRE3APHN5aT1jOWXSPAZa5cDMla69CbbmfbHfV5_TXFTm0fR7o/s1600/IMG_20161007_134831.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpprCwhZzns2wI13KLzFsmajLDpu6wFDoWcioDMmOSpqe8l6lmSXT7ap6XiiQXfBV_D2pLTVj1M50I46-iJFfOoEagZuRE3APHN5aT1jOWXSPAZa5cDMla69CbbmfbHfV5_TXFTm0fR7o/s400/IMG_20161007_134831.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVEpdPA-ATxNymc49clGX6K7Og48Gq2OPErVCN34qBX0P_Ogp9FjRYQX37NeyKYfU7VIn0LHPRXI65G4P3QwRheUv_G69w0N0T1qosVDEbfEZ9Kn0Z0UJZ_4TJs-PqY4cwTVOpRuZT6D4/s1600/IMG_20161008_140205.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVEpdPA-ATxNymc49clGX6K7Og48Gq2OPErVCN34qBX0P_Ogp9FjRYQX37NeyKYfU7VIn0LHPRXI65G4P3QwRheUv_G69w0N0T1qosVDEbfEZ9Kn0Z0UJZ_4TJs-PqY4cwTVOpRuZT6D4/s400/IMG_20161008_140205.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnnG8v8UPfHla3l533VQvi_fnbwdy5IzyffjFiXmnmKjvO7Ax8TwQ81kXhXO1dM7gmxisCL-7n8REBHNO2OJEn-equXy0-Oig9K0vRAaoR3zwf1GjzZXnXOEq9LwdrXZIHNJ7m3EjlIWU/s1600/IMG_20161008_140546.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnnG8v8UPfHla3l533VQvi_fnbwdy5IzyffjFiXmnmKjvO7Ax8TwQ81kXhXO1dM7gmxisCL-7n8REBHNO2OJEn-equXy0-Oig9K0vRAaoR3zwf1GjzZXnXOEq9LwdrXZIHNJ7m3EjlIWU/s400/IMG_20161008_140546.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjycg02WGr1RF4TKGM6GO9lQidsUsFRXr-HOkrYP26OEkZK7fokeAWtA18eyxp1P5KkDgp_9ZrQCYAURUz_HsAqZddjwMhufcjCuBkn97R4bamooE5crlRrJnyNirq5B3pmNLOhU__nBHM/s1600/IMG_20161008_140728.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjycg02WGr1RF4TKGM6GO9lQidsUsFRXr-HOkrYP26OEkZK7fokeAWtA18eyxp1P5KkDgp_9ZrQCYAURUz_HsAqZddjwMhufcjCuBkn97R4bamooE5crlRrJnyNirq5B3pmNLOhU__nBHM/s400/IMG_20161008_140728.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9St7Q45SoBEgiOMk1yuLL4GNoISJIsXFIrkkGlZQV2aqKvIxgWKqPmQzpLp2EjhzOON3uhFCJUnXzqwhVjAX9uOHK0WtbF-K7qoJk0s9qKZkvw8scK0RXod3-5eL_lsMpR7RxdVVK4aY/s1600/IMG_20161015_103714.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9St7Q45SoBEgiOMk1yuLL4GNoISJIsXFIrkkGlZQV2aqKvIxgWKqPmQzpLp2EjhzOON3uhFCJUnXzqwhVjAX9uOHK0WtbF-K7qoJk0s9qKZkvw8scK0RXod3-5eL_lsMpR7RxdVVK4aY/s400/IMG_20161015_103714.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkBosiavGDQE8VAKgXU4bFSmo3xMmsSpcumVnllBGTth1lMALNIl2UKgBhhFkRdrKf3wqwAyhzcbtgKAbNhdqM9s-pQjcjitVkvzVo-38gJrKWFBb1rsXcamCZqTyd9M9cPa4t9Hnh_-o/s1600/IMG_20161017_105029.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkBosiavGDQE8VAKgXU4bFSmo3xMmsSpcumVnllBGTth1lMALNIl2UKgBhhFkRdrKf3wqwAyhzcbtgKAbNhdqM9s-pQjcjitVkvzVo-38gJrKWFBb1rsXcamCZqTyd9M9cPa4t9Hnh_-o/s400/IMG_20161017_105029.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjovhoaSUf99MpLdK6cSFSOUhJRvYbq6VtfG3XDk2-HxlrhL3Ii1MAZdCoKWwZdqa2eU7Ng0fhoCP0Uu8dPf7rK4LVMgP43hrgkQ2VdnYD522q-GCictx6LeWCuAKJivMBHtZq2-x8VIPM/s1600/IMG_20161017_105355.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjovhoaSUf99MpLdK6cSFSOUhJRvYbq6VtfG3XDk2-HxlrhL3Ii1MAZdCoKWwZdqa2eU7Ng0fhoCP0Uu8dPf7rK4LVMgP43hrgkQ2VdnYD522q-GCictx6LeWCuAKJivMBHtZq2-x8VIPM/s400/IMG_20161017_105355.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHv7hd1JJVxUPk0u206FQjzAe-icT5gQK-VhyphenhyphenWCzxCafwdq60mCDE1GoZ5N2zfFfAbSw_SVMnC78UCFGgzwK0O7E5aQZg3Qs75wY-8KWQjoLI6k9ctzflBliSdIaEimRDqDNya2nfAzUE/s1600/IMG_20161017_111009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHv7hd1JJVxUPk0u206FQjzAe-icT5gQK-VhyphenhyphenWCzxCafwdq60mCDE1GoZ5N2zfFfAbSw_SVMnC78UCFGgzwK0O7E5aQZg3Qs75wY-8KWQjoLI6k9ctzflBliSdIaEimRDqDNya2nfAzUE/s400/IMG_20161017_111009.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn_yeSozXN8lP88XX8SN08qfiABqVLTS9QzIJclBBCw1QbxBwordHEI3KR7fNXSwzeMbR9Wjd1bzLtExVnMpoRrNlXT4AfqANE4SKCx3LLynxZmV87HZ13oBlunsj0fIK97I_ildO-olg/s1600/IMG_20161018_151229.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn_yeSozXN8lP88XX8SN08qfiABqVLTS9QzIJclBBCw1QbxBwordHEI3KR7fNXSwzeMbR9Wjd1bzLtExVnMpoRrNlXT4AfqANE4SKCx3LLynxZmV87HZ13oBlunsj0fIK97I_ildO-olg/s400/IMG_20161018_151229.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSlNSPkyyk-HYrN8Fr6DuWCYpijf9Rjm29NIWSyu9HBf9UhRILl8Au5DezhN5xmA78qY9ZvZIOBof5Zk-T14zNJwVSYaxDpK0N7Z6_ub5GogDeHf2NOzsL5z7OhWyKC-pUO7SuZy87RzY/s1600/PANO_20160929_173516.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSlNSPkyyk-HYrN8Fr6DuWCYpijf9Rjm29NIWSyu9HBf9UhRILl8Au5DezhN5xmA78qY9ZvZIOBof5Zk-T14zNJwVSYaxDpK0N7Z6_ub5GogDeHf2NOzsL5z7OhWyKC-pUO7SuZy87RzY/s400/PANO_20160929_173516.jpg" width="308" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzydxxncPpKNQJWLz2QjBgCuwXAWMI-Xm-Fp_ueIQgHneHWmIk1cStBz7s2STG_E7BzQfWkQu5JNwiSXbeE2DvbASLMvECJTFmzCNuGLAS2TVbED_e9_sRioybS_tu4_Pr_Dlfr9g3O74/s1600/IMG_20161017_124313.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzydxxncPpKNQJWLz2QjBgCuwXAWMI-Xm-Fp_ueIQgHneHWmIk1cStBz7s2STG_E7BzQfWkQu5JNwiSXbeE2DvbASLMvECJTFmzCNuGLAS2TVbED_e9_sRioybS_tu4_Pr_Dlfr9g3O74/s400/IMG_20161017_124313.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh4829rghV5YoEr4lPtruHJptbrw6w6_0tMRabHs3xegKKQMc6cnfexauXLlZUqj0Mwz07jG4cDu3h1u1eYAka48Vpg7uZL3qhd8tE72IpDJjLtQlf9poiz9oUfm4_Xs9T4r2fwWk3fRg/s1600/IMG_20161017_124213.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh4829rghV5YoEr4lPtruHJptbrw6w6_0tMRabHs3xegKKQMc6cnfexauXLlZUqj0Mwz07jG4cDu3h1u1eYAka48Vpg7uZL3qhd8tE72IpDJjLtQlf9poiz9oUfm4_Xs9T4r2fwWk3fRg/s400/IMG_20161017_124213.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1NVcGE-twzEyCqCv79B9JM9yjZdUqpjS38s0ub7_CaFc1rbQsEqFqe6mVH4I8B5keWYUaE5HD7QyniJeqWdWXV8E6-9_30YrWgwAZTU3Rvt9uKS5G19LwG_uzKtF2SIGEVZ6knTfLRGM/s1600/IMG_20161017_124301.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1NVcGE-twzEyCqCv79B9JM9yjZdUqpjS38s0ub7_CaFc1rbQsEqFqe6mVH4I8B5keWYUaE5HD7QyniJeqWdWXV8E6-9_30YrWgwAZTU3Rvt9uKS5G19LwG_uzKtF2SIGEVZ6knTfLRGM/s400/IMG_20161017_124301.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPgJ3haoLmmAq3dMYgJs4Rjsx-Kr7EzJMMefJzEoRfpbC-87PWLREXlMz8IbYt9PkmmlYsboO_bjeKnnTUwI6M7KeIe51keEXmiyc9cJWK-KDEz9zzbnt0IqW9Nc4-VtRPiw-35ThobUE/s1600/IMG_20161017_123623.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPgJ3haoLmmAq3dMYgJs4Rjsx-Kr7EzJMMefJzEoRfpbC-87PWLREXlMz8IbYt9PkmmlYsboO_bjeKnnTUwI6M7KeIe51keEXmiyc9cJWK-KDEz9zzbnt0IqW9Nc4-VtRPiw-35ThobUE/s400/IMG_20161017_123623.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_cv_uOga1gilbbUw-kPEHQuGnuJlhJ6orgGSeNd4fwLbBMLtdoj7hVyRa_oSfSbr6IMdsUDHyKmXPoUwuMSuGVcCzZmLvve6dLKgl1xlV6wcdzSrKyO2CZhKJEDqUz8gDPaPeEpGh5Ko/s1600/IMG_20161017_101409.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_cv_uOga1gilbbUw-kPEHQuGnuJlhJ6orgGSeNd4fwLbBMLtdoj7hVyRa_oSfSbr6IMdsUDHyKmXPoUwuMSuGVcCzZmLvve6dLKgl1xlV6wcdzSrKyO2CZhKJEDqUz8gDPaPeEpGh5Ko/s400/IMG_20161017_101409.jpg" width="225" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg03ZjLcvWsMYl2Zu2yExJQalaH6qX5Q0fyjsnC68OPVWc2Rf2e4vTkqwn_qbGsZqjCcvlBtNkbHiyW-GnLfE0R4b4-yeOIFvSo3Snc5fFl5ebH7E6do-TGj68KHG17aTFUiPTBRr5gNQI/s1600/IMG_20161008_144001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg03ZjLcvWsMYl2Zu2yExJQalaH6qX5Q0fyjsnC68OPVWc2Rf2e4vTkqwn_qbGsZqjCcvlBtNkbHiyW-GnLfE0R4b4-yeOIFvSo3Snc5fFl5ebH7E6do-TGj68KHG17aTFUiPTBRr5gNQI/s400/IMG_20161008_144001.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgkb395lBHfGKr7rH42cKOIDShHEEerguptlOJu24TcCc1gqZGp7afiizIcW-dqx-7GzU1OHOPb7_CpOkeJueam360pcmC4UDtiQvZXhED_dm9Fhxvh9nkRPGTG-MVy16dOZNqrjDKKFE/s1600/IMG_20161008_143824.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgkb395lBHfGKr7rH42cKOIDShHEEerguptlOJu24TcCc1gqZGp7afiizIcW-dqx-7GzU1OHOPb7_CpOkeJueam360pcmC4UDtiQvZXhED_dm9Fhxvh9nkRPGTG-MVy16dOZNqrjDKKFE/s400/IMG_20161008_143824.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIdCelPaAl7hHyz9PY7yIcF6cQ8QThWWRh-_zbXUlkQ9VOtoaeFP_krgfw5aWpiCsDIYIuW4d7yIphVqdVh7eEFjmilerHMUz48N1_hqYQK-wKNF9ptYii0FGwIuIZ86EAJ-N40TBs1Vc/s1600/IMG_20161008_143719.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIdCelPaAl7hHyz9PY7yIcF6cQ8QThWWRh-_zbXUlkQ9VOtoaeFP_krgfw5aWpiCsDIYIuW4d7yIphVqdVh7eEFjmilerHMUz48N1_hqYQK-wKNF9ptYii0FGwIuIZ86EAJ-N40TBs1Vc/s400/IMG_20161008_143719.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjTx3Q5jvbgyeBv7QKrf7cSOffR2Emnh_1j7U2HYQIHkn9O3FOxhhyphenhypheneDmSflvHjQZoXc1kfS4n5mvHuru2bxkbe_TDEndRFRepYrL5Mhur_GW60IjWrZGRq3idA3criBc6rbTPjY7Ffrk/s1600/IMG_20161008_143811.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjTx3Q5jvbgyeBv7QKrf7cSOffR2Emnh_1j7U2HYQIHkn9O3FOxhhyphenhypheneDmSflvHjQZoXc1kfS4n5mvHuru2bxkbe_TDEndRFRepYrL5Mhur_GW60IjWrZGRq3idA3criBc6rbTPjY7Ffrk/s400/IMG_20161008_143811.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjokR6tURM5zDSy7yHgHyJlkWVCIn7loL4QEZ9SFzXUn-XiZDC5_VrEwY_4BTuWRqyuDEegT8aAKlrKClrWtg5L_E1EiH4IJ5xUzr-YXv_NFXJcwmcr9B_IKGMmic1_NfS8MX6y_RuiXQs/s1600/IMG_20161008_143638.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjokR6tURM5zDSy7yHgHyJlkWVCIn7loL4QEZ9SFzXUn-XiZDC5_VrEwY_4BTuWRqyuDEegT8aAKlrKClrWtg5L_E1EiH4IJ5xUzr-YXv_NFXJcwmcr9B_IKGMmic1_NfS8MX6y_RuiXQs/s400/IMG_20161008_143638.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJPIn1uwWArJGcAsioubrBjA8cPIQCAiC5HL6EwfzXf1aFb7saNSN-wwvBYtt_R6d6SoL91qI24cDUxRTijlGwnVjoepefxy_Ytlo5BAZlyWJmdKgxdb0LP2YRytRy2VOjkxNaH65_ttU/s1600/IMG_20161008_143519.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJPIn1uwWArJGcAsioubrBjA8cPIQCAiC5HL6EwfzXf1aFb7saNSN-wwvBYtt_R6d6SoL91qI24cDUxRTijlGwnVjoepefxy_Ytlo5BAZlyWJmdKgxdb0LP2YRytRy2VOjkxNaH65_ttU/s400/IMG_20161008_143519.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi47WAt9Kl6sV7vvQbqj2yKWIIXFahrtBtb2v9PUgPi2dd0JXiMu-C3VDZfH57lihM_N6lcs9-O17x1LqPy8esipPosE9LwUmDhdS1NinxPd-mcdAa-dpghj3X3O8G6ve5aL-JeDDVN-2U/s1600/IMG_20161008_143359.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi47WAt9Kl6sV7vvQbqj2yKWIIXFahrtBtb2v9PUgPi2dd0JXiMu-C3VDZfH57lihM_N6lcs9-O17x1LqPy8esipPosE9LwUmDhdS1NinxPd-mcdAa-dpghj3X3O8G6ve5aL-JeDDVN-2U/s400/IMG_20161008_143359.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpYoDd6dA0Y7YId02Mpa8j9CkzyEk_BkGyqZqytU74QWaDtkGdtao54DY_czBUcsD4nbA3I3y3k1TrzShzbp28ocva70XdPsK-ntkSs2w6q7b4YId7dt7WOe0Ly6uEuii_4gy8-2fwrjE/s1600/IMG_20161008_143355.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpYoDd6dA0Y7YId02Mpa8j9CkzyEk_BkGyqZqytU74QWaDtkGdtao54DY_czBUcsD4nbA3I3y3k1TrzShzbp28ocva70XdPsK-ntkSs2w6q7b4YId7dt7WOe0Ly6uEuii_4gy8-2fwrjE/s400/IMG_20161008_143355.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtJ59xpM3sAp0z3ON1HHe3oUlUAVpMye1Nkirg7llN1YRvWz_kbRzJKYYq9L7Sa79P3M7VPN787aP1R6foDdOxWo9box4QSafHX7ck1-zKrfppCA2EAq6mUntPVsuPlAuKAjq8SbkrXos/s1600/IMG_20161008_143353.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtJ59xpM3sAp0z3ON1HHe3oUlUAVpMye1Nkirg7llN1YRvWz_kbRzJKYYq9L7Sa79P3M7VPN787aP1R6foDdOxWo9box4QSafHX7ck1-zKrfppCA2EAq6mUntPVsuPlAuKAjq8SbkrXos/s400/IMG_20161008_143353.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQDCp8Y5w-HueBYdzRtc-F1iz43gfA2vKw4opsCXFEtS7WNEg1xWX-ykCkxfuxdm_e_4h-0RLY4Y51v50BZPBng08l3xPq37edTqIVet93xKw9SDLMRExC1Ltb-0Lwud4bRZaui3ExGI/s1600/IMG_20161008_143155.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQDCp8Y5w-HueBYdzRtc-F1iz43gfA2vKw4opsCXFEtS7WNEg1xWX-ykCkxfuxdm_e_4h-0RLY4Y51v50BZPBng08l3xPq37edTqIVet93xKw9SDLMRExC1Ltb-0Lwud4bRZaui3ExGI/s400/IMG_20161008_143155.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhO_5Tl6ckOscQpZA65Jq0pcPClIqu8yGjJwoWcBtCztyMDJtVXclCZYJdDRcglBzRvSf8QvWU02whU1N7xfz7IbG1zftfGzUy0mnou1K47ATDoFmDo61gROuiwuqMGvGaj9VELUtnpK8/s1600/IMG_20161008_143040.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhO_5Tl6ckOscQpZA65Jq0pcPClIqu8yGjJwoWcBtCztyMDJtVXclCZYJdDRcglBzRvSf8QvWU02whU1N7xfz7IbG1zftfGzUy0mnou1K47ATDoFmDo61gROuiwuqMGvGaj9VELUtnpK8/s400/IMG_20161008_143040.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZERQC8uoOYODoZFMdTGEMnbtz5zvJFVAPKIB6O8Jk-Vmr9mdEUNFZJ5XcUJWX3w-x84-65sj2pRRYI5fTArt1QC_BWSjU9ETz78j27NSnDVhNvIwX1KLyeWL26k7Wj7Vhd5zK9_60khk/s1600/IMG_20161008_142905.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZERQC8uoOYODoZFMdTGEMnbtz5zvJFVAPKIB6O8Jk-Vmr9mdEUNFZJ5XcUJWX3w-x84-65sj2pRRYI5fTArt1QC_BWSjU9ETz78j27NSnDVhNvIwX1KLyeWL26k7Wj7Vhd5zK9_60khk/s400/IMG_20161008_142905.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY6q4Kp42nxt_hfROTLqQaKERscCR7ckrGxLfoFj45f3fzG37CPis0nnPwpmHAGUwB1Jea0jo2X1kX7yZWLqABuFVx9ZubzB4-E6uKSxZ6CS6E9I2fThxgdwYB5kvU9Nya0wcVCvCjsWE/s1600/IMG_20161007_123137.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY6q4Kp42nxt_hfROTLqQaKERscCR7ckrGxLfoFj45f3fzG37CPis0nnPwpmHAGUwB1Jea0jo2X1kX7yZWLqABuFVx9ZubzB4-E6uKSxZ6CS6E9I2fThxgdwYB5kvU9Nya0wcVCvCjsWE/s400/IMG_20161007_123137.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ3t1Md7w4-llDqQxupSF646SzRqb-qyUw-DXzrjPxwImXQrOVxg8nqC7aH1rVM0N3ZmTDJDzCvTmd3L_G9A8xGyESfRwk-n_zcIJ8STIp9CdqoijjD-O6_JW8QZf9AL-UQU1_HDQtF58/s1600/IMG_20161007_123114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ3t1Md7w4-llDqQxupSF646SzRqb-qyUw-DXzrjPxwImXQrOVxg8nqC7aH1rVM0N3ZmTDJDzCvTmd3L_G9A8xGyESfRwk-n_zcIJ8STIp9CdqoijjD-O6_JW8QZf9AL-UQU1_HDQtF58/s400/IMG_20161007_123114.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjgkyjWpNEpKU6icxw77CKJMV8HBsdr8LRSShiqFLONrhibTU8T_DeHz8QjWS-hinFxsEJ2mh10zV98NcYgJWw86tizy2SVUQLDf5A4vfD2tE7MEfv8KaDPQlvnZVI5nOhgPJioF7GFeI/s1600/IMG_20161006_144105.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjgkyjWpNEpKU6icxw77CKJMV8HBsdr8LRSShiqFLONrhibTU8T_DeHz8QjWS-hinFxsEJ2mh10zV98NcYgJWw86tizy2SVUQLDf5A4vfD2tE7MEfv8KaDPQlvnZVI5nOhgPJioF7GFeI/s400/IMG_20161006_144105.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG87_2L_zoO86XSmqHXOyCHF3E16rF0w9ztX1LMLFdsIspdqF5k4Zf6XZIKBodieY7WAchejYBC9B1yLn9nk9-7mpx8s4lmj38q1H2l4Vua3kJvnce2XjVvHqKBzuobcMDnm2p_shs9MY/s1600/IMG_20161004_131452.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG87_2L_zoO86XSmqHXOyCHF3E16rF0w9ztX1LMLFdsIspdqF5k4Zf6XZIKBodieY7WAchejYBC9B1yLn9nk9-7mpx8s4lmj38q1H2l4Vua3kJvnce2XjVvHqKBzuobcMDnm2p_shs9MY/s400/IMG_20161004_131452.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXOhQtocWXNKjtyhjw22HoVygEzSRV2GxU788OPi-B0jqi59AJ8c7Fj2bDMxXAyI4qaALz8WRl1Lzoui9cKJOstK3EElhdiDT2CwchiDdbRGn77Wi3Ynx9s9uuKwiTJpkN77lIDK3fY74/s1600/IMG_20160929_193943.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXOhQtocWXNKjtyhjw22HoVygEzSRV2GxU788OPi-B0jqi59AJ8c7Fj2bDMxXAyI4qaALz8WRl1Lzoui9cKJOstK3EElhdiDT2CwchiDdbRGn77Wi3Ynx9s9uuKwiTJpkN77lIDK3fY74/s400/IMG_20160929_193943.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcA0JurosHZc-NOPPoP4fJ8H01go8jEqawsmnFw1xrr4vM58-R8b6AN7bOvvYSsrVCEk8kjCKVdXbEPYEKngj26EcwC9keIaenJdIEx_Y1XP4WLt0RmyG7UBwXphAJ0U4XEik95e1tJYE/s1600/IMG_20160929_195159.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcA0JurosHZc-NOPPoP4fJ8H01go8jEqawsmnFw1xrr4vM58-R8b6AN7bOvvYSsrVCEk8kjCKVdXbEPYEKngj26EcwC9keIaenJdIEx_Y1XP4WLt0RmyG7UBwXphAJ0U4XEik95e1tJYE/s400/IMG_20160929_195159.jpg" width="300" /></a></div>
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com2tag:blogger.com,1999:blog-2824559967983244468.post-18444207137660040942016-09-30T18:35:00.001-07:002016-09-30T18:35:04.224-07:00How to Survive a Rare DiseaseHere is a great article about Maya.<br />
<a href="https://www.blogger.com/goog_1963490199"><br /></a>
<a href="http://www.hatch-mag.com/2016/09/20/survive-rare-disease/">http://www.hatch-mag.com/2016/09/20/survive-rare-disease/</a><br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-72989691205126391732016-09-24T19:08:00.002-07:002016-09-24T19:39:03.789-07:00#FightingFor...<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It is so hard to explain how much I suffer before writing a blog post. Sometimes an idea rattles around for months. Always surfacing and then retreating back into my overly critical mind.</span></div>
<b id="docs-internal-guid-a46ca3eb-5f08-1c96-ec1a-f147cbedcc62" style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">One such post is about the others who we hope to help with </span><a href="http://bjames358.blogspot.com/2016/05/update-on-maya-kicking-off-our.html" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">this research project.</span></a><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Yes, it is called <a href="http://www.fightingformaya/" target="_blank">#FightingForMaya</a> and yes (to Maya’s chagrin) her picture and name are everywhere, but there are too many others who will hopefully benefit from this project.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There is Jacoby, David, Abigail, </span><span style="background-color: white; color: #1d2129; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kristiina, Hannah,</span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> those three Italian Siblings who we read about, but never heard from and the two kids in Europe who’s case study was presented at a conference, but they decided to remain anonymous. Each is similar to Maya in that their presentation of this disorder is Atypical (but also individually very different). I also found each after my initial blog post in 2014. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There are also the kids with the Classic form of CLN2. Too many kids and their families fighting for every inch.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Who are the people that I name above? I know a few through Facebook. I regularly read about their struggles. Usually, their moms post about… struggling… fighting and loving their children.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I see their pictures, sitting, leaning on someone for support, but always smiling. I’ve never heard their voices, but I know they sound slurred. I know that eating can be hard and walking is questionable. I know that the disease is progressing, slowly, but progressing. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I know only because I see it in Maya.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Jacoby is 14 and yes his smile is worth a million bucks. Earlier this year he went to Prom. I never had to ask why it was important, because the pictures say it all. I see Jacoby and I see my own boys and as simple as it sounds, I want Jacoby to get better.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><img alt="_20160417_195953.JPG" height="783" src="https://lh6.googleusercontent.com/G_yF4iDVQPhzQIC2QVi77GxetvgX7XbM_FQEey1Zb00c37rQXPquafBdhWmZWopsS2Kqiv3S8sA4JQeFqMirs_kgiZZqulnud62eCcGIY2TSk2_Cq3U4QR4doOWog1pdREP3fsL9" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="624" /></span></div>
<b style="font-weight: normal;"><br /><img alt="_20160417_195921.JPG" height="845" src="https://lh4.googleusercontent.com/2epi2tNfrSJVnoK2As13VapZ0ZfnVk0ifQ4M1s_KwwJ1kJGRqdRzZxXaaavHuIiVlo6eNN7Ut5b7TSPDq8xtYRKUoqpuaR-sjYtqyJxKaBGFqdxscxGmMgwYHfPv1JJBylQRInkI" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="546" /></b><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There is also David.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">David is the oldest person (outside of the literature) that I know of with the Atypical form of this disorder. David and his mom, Michele, hold a special place in my heart, because they were the first Atypical family that I found.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It was 2015, and David’s mom posted on the Batten Disease Support Group Facebook page a happy birthday wish to her son “Who was turning 29 and had CLN2.” Anyone familiar with batten disease knows that those with CLN2 rarely see a birthday beyond 12. That is, unless they are Atypical. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">After a ton of messaging, Michele (who is in Australia) and I spoke via Messenger. With tears streaming (yes, streaming), I listened as Michele told me that she never thought that she would find someone else like David. We compared symptoms (i.e., how our kids were similar, but different from each other and the classic form). We spoke about the importance of exercise and keeping our kids motivated. We spoke about how a name or diagnosis doesn't really matter.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">If Bill Gates, Warren Buffet, Mark Zuckerberg or some other mega wealthy person were to task me to solve this disorder, I would go study David.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><img alt="10991255_10153281945015116_8745076249357776973_n.jpg" height="832" src="https://lh3.googleusercontent.com/_-SWmHKh5YkY8jDTpk6_M7Tmwrgc3-5yjCfPLsGg82Qd5KNNUI5qorHklkcruGSNpshF1E73oaiQGPex1noKRwwDdKGWRzIptjbOd84bzNGYZZ8_lUKkF498rwWh3AKZiAz28Nbz" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="624" /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><img alt="14067694_10154465520638739_4772474598372067025_n.jpg" height="960" src="https://lh5.googleusercontent.com/Oeabj9jaQ0Q-w8VCADc6IuvortcCknxdzUQ60taMPx7nPb7PIDYp3evppbrIgN-Zq1NxW564O00fO41JXbBfcaNw9XMayL_MYk1N9AnoGgG2wibYwrNMNrMhR9NJlZbyy58XRA4E" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="540" /></span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In the end, this is a $200,000 project, that not only studies the Atypical, but the typical forms of CLN2. It is a project that is shining a light into the critical world of the Lysosome and the 50 plus diseases associated with that critical little organelle (e.g., Parkinson's and Alzheimers).</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Most important this project will hopefully deliver a treatment for Jacoby, David, Maya, Abigail, </span><span style="background-color: white; color: #1d2129; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kristiina, Hannah,</span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> those three Italian Siblings, the two kids in Europe, those with Classic CLN2 and those who are yet to be diagnosed.</span></div>
<br />
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">That is the purpose of this project, and that is who we are #FightingFor….</span></div>
bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com1tag:blogger.com,1999:blog-2824559967983244468.post-17069712497449276882016-08-30T09:23:00.003-07:002016-08-30T09:23:50.731-07:00The Importance of this Project<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiHQnLjV5OGP0_Eg68jV_dJtfhOaxFUx6nXWnFsqLwBHHe4-S7vCKBalsycQZfYvAkMOkyVqOHyfhBlVsoR4dOa06zL8OYU4c9cZ1yeXXrHJNHpWI1lSRe5l5nFe4ONRWmzWoUnphRuOc/s1600/FB_IMG_1472527074005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiHQnLjV5OGP0_Eg68jV_dJtfhOaxFUx6nXWnFsqLwBHHe4-S7vCKBalsycQZfYvAkMOkyVqOHyfhBlVsoR4dOa06zL8OYU4c9cZ1yeXXrHJNHpWI1lSRe5l5nFe4ONRWmzWoUnphRuOc/s320/FB_IMG_1472527074005.jpg" width="320" /></a></div>
<span id="goog_1609068873"></span><span id="goog_1609068874"></span><br />
<br />
<div class="" data-block="true" data-editor="elk5h" data-offset-key="31eem-0-0" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
<div class="_1mf _1mj" data-offset-key="31eem-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span class="_5u8u" data-offset-key="31eem-0-0" spellcheck="false" style="background-color: #dce6f8; font-family: inherit;"><span data-offset-key="31eem-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">Suzette</span></span></span><span data-offset-key="31eem-1-0" style="font-family: inherit;"> and I were very excited to learn that other organizations (representing other forms of </span><span class="_5u8n" data-offset-key="31eem-2-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-2-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#Batten</span></span></span><span data-offset-key="31eem-3-0" style="font-family: inherit;"> Disease) have recently decided to fund Dr. Sardiello's research at the Jan and Dan Duncan Neurological Research Institute (</span><span class="_5u8n" data-offset-key="31eem-4-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-4-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#NRI</span></span></span><span data-offset-key="31eem-5-0" style="font-family: inherit;">) at </span><span class="_5u8u" data-offset-key="31eem-6-0" spellcheck="false" style="background-color: #dce6f8; font-family: inherit;"><span data-offset-key="31eem-6-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">Texas Children's Hospital</span></span></span><span data-offset-key="31eem-7-0" style="font-family: inherit;">. Below is a recently released lay person's description of the research and it's potential to help those with Maya's disorder (Atypical TPP1 Deficiency (</span><span class="_5u8n" data-offset-key="31eem-8-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-8-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#SCAR7</span></span></span><span data-offset-key="31eem-9-0" style="font-family: inherit;">), other forms of Batten disease and so many other disorders (e.g., </span><span class="_5u8n" data-offset-key="31eem-10-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-10-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#Alzheimer</span></span></span><span data-offset-key="31eem-11-0" style="font-family: inherit;">, </span><span class="_5u8n" data-offset-key="31eem-12-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-12-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#Parkinson</span></span></span><span data-offset-key="31eem-13-0" style="font-family: inherit;"> and </span><span class="_5u8n" data-offset-key="31eem-14-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-14-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#Huntington</span></span></span><span data-offset-key="31eem-15-0" style="font-family: inherit;"> disease). This is very important research and we want to thank you for continuing to support our efforts. </span><span class="_5u8n" data-offset-key="31eem-16-0" spellcheck="false" style="background-color: rgba(88, 144, 255, 0.14902); border-bottom: 1px solid rgba(88, 144, 255, 0.298039); font-family: inherit;"><span data-offset-key="31eem-16-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">#FightingForMaya</span></span></span><span data-offset-key="31eem-17-0" style="font-family: inherit;">. <a href="http://www.fightingformaya.com/">www.fightingformaya.com</a></span></div>
</div>
<div class="" data-block="true" data-editor="elk5h" data-offset-key="36rna-0-0" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
<div class="_1mf _1mj" data-offset-key="36rna-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="36rna-0-0" style="font-family: inherit;"><br data-text="true" /></span></div>
</div>
<div class="" data-block="true" data-editor="elk5h" data-offset-key="7e7b9-0-0" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
<div class="_1mf _1mj" data-offset-key="7e7b9-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="7e7b9-0-0" style="font-family: inherit;"><b>mTOR-Independent Lysosomal Enhancement for the Treatment of Neuronal Ceroid Lipofuscinoses (CLN3, CLN6, CLN8)</b></span></div>
</div>
<div class="" data-block="true" data-editor="elk5h" data-offset-key="9ufgi-0-0" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
<div class="_1mf _1mj" data-offset-key="9ufgi-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="9ufgi-0-0" style="font-family: inherit;"><br /></span></div>
<div class="_1mf _1mj" data-offset-key="9ufgi-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="9ufgi-0-0" style="font-family: inherit;">Principal Investigator: Marco Sardiello Ph.D., Baylor College of Medicine</span></div>
</div>
<div class="" data-block="true" data-editor="elk5h" data-offset-key="edc4r-0-0" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
<div class="_1mf _1mj" data-offset-key="edc4r-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="edc4r-0-0" style="font-family: inherit;"><br data-text="true" /></span></div>
</div>
<div class="" data-block="true" data-editor="elk5h" data-offset-key="dok0e-0-0" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
<div class="_1mf _1mj" data-offset-key="dok0e-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="dok0e-0-0" style="font-family: inherit;">Many neurodegenerative diseases share as a common cellular feature the accumulation of undigested material, which in many instances has been proven to play a causative role in the pathogenesis of the disease. Pathological accumulation of undigested material is often the result of an overwhelmed cellular degradative system, which can be due either to genetic defects that affect the function of lysosomal and autophagy pathways (e.g., lysosomal storage disorders), or to different causes such as the abnormal generation of aggregation-prone proteins (e.g., Alzheimer’s, Parkinson’s and Huntington’s diseases). We and others have provided proof-of-principle evidence that activation of lysosomal pathways may be an effective strategy to ameliorate disease phenotypes in animal models of these neurodegenerative diseases. The overall goal of this project is to use pharmacological activation of lysosomal pathways—obtained by repositioning an FDA-approved drug—to counteract disease progression in a mouse model of Neuronal Ceroid Lipofuscinosis. We will also test how this strategy can be extended to the whole group of the NCLs by cell-centered studies. We have strong evidence that lysosomal enhancement mediated by activation of TFEB, a master regulator of autophagic-lysosomal pathways, is of benefit in mouse models of Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) and Sanfilippo Syndrome Type IIIB. We have now identified a new signaling pathway that (1) leads to the activation of TFEB in the brain, (2) is pharmacologically actionable with small drugs that are currently being tested in clinical trials, and (3) is independent of the mTOR signaling. Our preliminary data show that the pathways activated by TFEB have the potential to counteract neurodegeneration in a plethora of diseases characterized by the storage of undegraded material. Thus, results from this project could benefit the whole group of Neuronal Ceroid Lipofuscinoses (NCLs) and could rapidly lead to translation.</span></div>
</div>
bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-61760088865596701162016-08-26T18:33:00.000-07:002016-08-26T18:33:08.605-07:00#FightingForMaya in a Small World<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnDizaxFb3KUyxSbpiHEtdG5SYEFzQS88ZTABoTtMBYNkQEoFVV3P119bd5tgJfANqo5b5XddouJkrGnSDH4zPqJNbYbhIGtcWg42WbqRrRvWmWc3Ep2U2faRAZrCsOaskqcWXKOdy5d4/s1600/14045760_10209377623389409_7881885200542322338_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnDizaxFb3KUyxSbpiHEtdG5SYEFzQS88ZTABoTtMBYNkQEoFVV3P119bd5tgJfANqo5b5XddouJkrGnSDH4zPqJNbYbhIGtcWg42WbqRrRvWmWc3Ep2U2faRAZrCsOaskqcWXKOdy5d4/s320/14045760_10209377623389409_7881885200542322338_n.jpg" width="240" /></a></div>
<br />
<br />
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px;">
Wishing you a happy <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/fightingformaya?source=feed_text&story_id=1764207677160929" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #4267b2; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">FightingForMaya</span></span></a> Friday.</div>
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
<span style="line-height: 19.32px;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
<span style="line-height: 19.32px;">I love this picture, because</span><span style="line-height: 19.32px;"> </span><a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1023039660" href="https://www.facebook.com/jodi.greevesrizzi" style="color: #365899; cursor: pointer; font-family: inherit; line-height: 19.32px; text-decoration: none;">Jodi</a><span style="line-height: 19.32px;"> </span><span style="line-height: 19.32px;">(the photographer) spotted us at a concert. She told us how excited she was to have recently received her #FightingForMaya shirt, and then she asked how we knew Maya. Beautiful!!!</span></div>
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
<br /></div>
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
I am constantly amazed by how far this message has spread and thankful for the support we have received. </div>
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
<br /></div>
<div style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px; margin-bottom: 6px; margin-top: 6px;">
Thank you.</div>
<div class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">
<div style="font-family: inherit; margin-bottom: 6px;">
<a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.fightingformaya.com%2F&h=7AQEsPoqVAQEmX6UpvOnrDHHj0SrmDs0-GscY8MONxCv91A&enc=AZNYBsN5tRoPodVYj2MOboicNiLjaNq9to5NnIFA4TOx5_eUW37qarTpzxPzbzYuTh5yY-AdIxRTn8f8uUQ5KzjkCvw_6q2lV2Il9_9J_eQUIthfww8rXrkT7WDz7K-rS2PJD7pO-UX0RluILoD18-AJt2GTMc_dro6Wg5mbZxPGrGJ1-zYaW3K4D_rZawkT2jYd7pi45istpCplJ7ktnGYH&s=1" rel="nofollow" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration: none;" target="_blank">www.fightingformaya.com</a></div>
</div>
bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-8078247966701547762016-07-28T13:52:00.000-07:002016-09-09T14:56:28.608-07:00Never Give Up The Fight!!!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjWSvoQoY7KxGsR_0yxxMxbmWxFflDBOdSKnnS3QeckIC6-C-bizrS4kmngMdHApnpY-LBfxscLRiYOssajG1TkucBe1gDxcN6gxyjfH77PX1woH-QqRyZsBmRYkZYnyyT_oowF-u0hIw/s1600/IMG_20140707_175358.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkpSZ5HjDUG7T9Yy_JOdKWcrDwWaMOkjlIxj-LIqno6Nz_vNx8DZlfu82EinjXIZv-WTEkUfF4dTggpK_xJkCxlxnlEdjbgUksowVuxDF6yNeFxNJ_vKyMLiFI8tSm7WghHzp5pURDow/s1600/IMG_20140712_195628.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkpSZ5HjDUG7T9Yy_JOdKWcrDwWaMOkjlIxj-LIqno6Nz_vNx8DZlfu82EinjXIZv-WTEkUfF4dTggpK_xJkCxlxnlEdjbgUksowVuxDF6yNeFxNJ_vKyMLiFI8tSm7WghHzp5pURDow/s320/IMG_20140712_195628.jpg" width="320" /></a></div>
<br />
<br />
We're sitting on a plane, 35,000 feet in the air, making our way to the most beautiful place in America, the Northeast Kingdom of Vermont.<br />
<br />
This is our annual pilgrimage, where we trek across the country and visit the majestic land where Suzette was raised. It is a big trip for our family. Up at "Dark-O-Thirty", in a car, baggage check, through security, on a plane, deplane, on another plane and in another car. We usually get to our final destination 18 hours after our initial departure. Despite it all, this trip is always worth it. We step away from work, school, chores, soccer, traffic and spend our time with family and friends in God's country.<br />
<br />
This pilgrimage is one of the ways that I've measured the time span of our family. First, it was just the two of us. Then +1 little one, +2, +3 and now we are +4. From flight delays and diversions, to getting kids through security, an angry co-passenger who couldn't understand why an 18 month old might cry, to keeping everyone busy and fed... we've seen and done it all on these trips.<br />
<br />
This year, the trip is a little different. The trek through the airport, from the counter, through security to the gate and to our connecting flight is a lot of walking. Suzette and I talked about it ahead of time and decided that we would go ahead and get a wheelchair for Maya. We didn't really discuss why, but things have progressed to the point where walking long distances is so very difficult for her. She had recently used a wheelchair at Disneyland, which was a very difficult milestone for all involved, but it was the right decision and it worked out.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
So, as Maya and I were making our way to the car this morning, I asked her if she and mommy had talked about using a wheelchair at the airport. It is hard to describe, but Maya stopped in her tracks, looked me dead in the eye and with every ounce of her soul, she calmly but unequivocally said, "<b><u>I want to walk</u>"</b>.<br />
<br />
And there it was... the <b>Fight</b> that is Maya. The <b>Fight</b> that reminds us that although Maya's physical body is not doing well, her spirit is strong, and her will is unbroken.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0LavE00H-95XMCXg5V3Tgygj9K3xtsRhC_J6bi5jKQnCN3dLMFxBDTgtmWGQL1bp6QopbUkycmy5OCn6RIAJM_hND20xnuBqM_QIhK-_aKt1iZvZ2SVrRU6wO-pGSdNVdQ12IVfEsfjA/s1600/M1080064.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0LavE00H-95XMCXg5V3Tgygj9K3xtsRhC_J6bi5jKQnCN3dLMFxBDTgtmWGQL1bp6QopbUkycmy5OCn6RIAJM_hND20xnuBqM_QIhK-_aKt1iZvZ2SVrRU6wO-pGSdNVdQ12IVfEsfjA/s320/M1080064.JPG" width="320" /></a><br />
<br />
--<br />
Earlier this week, I received a call from one of the largest companies in town and they had heard about #FightingForMaya. I was told that their new CEO had selected Maya's story and the #FightingForMaya campaign as a story he wanted to share during his first company wide meeting. He wanted to share a story with his employees about the impact their work was having on the lives of so many dealing with rare diseases and how hard families and communities are fighting for the lives of their loved ones. I was truly humbled.<br />
<br />
During the 24hrs after the initial call with the company, we scrambled to provide them with #FightingForMaya t-shirts and we discussed logistics. At some point, I received an email from the company with the subject line "<b>[Company X] is #FightingForMaya</b>" and it hit me like a ton of bricks.<br />
Yes, we have done so much in a short amount of time, and no, this wasn't the first company to come forward and join the fight, but now... at this point in time, it is so clear that this project is going to make a difference. That Maya's fight, and your support are going to make the difference... not just for Maya, but for so many impacted by this and too many other rare diseases.<br />
<br />
So this Friday, as you pull on your #FightingForMaya t-shirts, please know that Maya is still fighting, know that our message is reaching the right ears and know that <b>we</b> are making a difference.<br />
<a href="https://www.blogger.com/goog_1429155078"><br /></a>
<a href="http://www.fightingformaya.com/">www.fightingformaya.com</a><br />
<br />
<br />
Updated with a picture of the Illumina executive team.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdAFBorGKpYu-N0GG5J569Pruy3edWflGjDdGDA2bNBGxI5rNMhwLp-NAgyW2nyjn2xwZMw_Jlx2-XUzRkJDyMk-H5frKd34vogY1H4qxL3M8MA9OQH2KkwBNRKsRgvlRszOfE1GmhJBg/s1600/Illumina_exec.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="576" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdAFBorGKpYu-N0GG5J569Pruy3edWflGjDdGDA2bNBGxI5rNMhwLp-NAgyW2nyjn2xwZMw_Jlx2-XUzRkJDyMk-H5frKd34vogY1H4qxL3M8MA9OQH2KkwBNRKsRgvlRszOfE1GmhJBg/s640/Illumina_exec.png" width="640" /></a></div>
<br />
<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com11tag:blogger.com,1999:blog-2824559967983244468.post-64111538054450847152016-07-25T14:49:00.000-07:002016-07-25T14:49:36.424-07:00Rare Bear<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsAfARjWC0g4RPY3up8xXbfIK3CHBg0rrvmMV-FxT-gmszaEuN8zdR8Hbn6waCjX5b0IaTXeGLVjbWHT0QAUhQzLxRnvVPR_w_EZrEyYS_ACeK_CWAr35Umy1V_jHKa7oQufpLjLnZEuQ/s1600/13767369_1750883188493378_3567366014043765118_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsAfARjWC0g4RPY3up8xXbfIK3CHBg0rrvmMV-FxT-gmszaEuN8zdR8Hbn6waCjX5b0IaTXeGLVjbWHT0QAUhQzLxRnvVPR_w_EZrEyYS_ACeK_CWAr35Umy1V_jHKa7oQufpLjLnZEuQ/s320/13767369_1750883188493378_3567366014043765118_o.jpg" width="320" /></a></div>
<span id="goog_1461291132"></span><span id="goog_1461291133"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">This weekend <span style="background-color: white; color: #1d2129; line-height: 18px;">Maya received her Rare Bear from </span><a data-hovercard="/ajax/hovercard/page.php?id=294936630662286&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/RAREScience/" style="background-color: white; color: #365899; cursor: pointer; line-height: 18px; text-decoration: none;">RARE Science Inc.</a><span style="background-color: white; color: #1d2129; line-height: 18px;">. Her name is Violet and she was made by volunteers at </span><a data-hovercard="/ajax/hovercard/page.php?id=126882554014766&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/TheJackofArtsAZ/" style="background-color: white; color: #365899; cursor: pointer; line-height: 18px; text-decoration: none;">The Jack of Arts</a><span style="background-color: white; color: #1d2129; line-height: 18px;">, a little quilt shop located in Safford, Arizona. Violet is absolutely beautiful and brought a huge smile to Maya's face. The Rare Bear program is an amazing program where volunteers across the country stitch and stuff teddy bears for children with rare disorders. It is truly an amazing program.</span></span>bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-47135236541383354152016-07-14T15:16:00.006-07:002016-07-14T15:16:56.222-07:00An Update<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHPXQxz3XUjPrH81cxKdkfdcV6ReasCeH9l8WyhMPehPwGrINHBeyNyvDtODIudqkd58qC-tDgJyhMwdUpe0bmx6rq4qNXB9q3ZVCZIdhba9UTGKyt0x9i1t7-pKC-n0o1Es76Dg_m7k4/s1600/PO7469457-back-CU.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHPXQxz3XUjPrH81cxKdkfdcV6ReasCeH9l8WyhMPehPwGrINHBeyNyvDtODIudqkd58qC-tDgJyhMwdUpe0bmx6rq4qNXB9q3ZVCZIdhba9UTGKyt0x9i1t7-pKC-n0o1Es76Dg_m7k4/s320/PO7469457-back-CU.png" width="320" /></a></div>
<br />
<br />
It has been too long since I posted an update about our #FightingForMaya efforts. First, I want to thank you for your love and support. The response has been unbelievable.<br />
<br />
We launched this campaign on May 2nd and really didn't know how people would respond. I can assure you that the response has been unparalleled.<br />
<br />
In less than 3 months, we have:<br />
<br />
-sold a little under 500 #FightingForMaya T-Shirts,<br />
<br />
-from t-shirts alone, raised over $7,000, and<br />
<br />
-most important, $70,000, of the $200,000 needed, has been donated to the SCAR7 research project at Texas Children's Hospital.<br />
<br />
This is absolutely incredible.<br />
<br />
We still have work to do, but we really want to thank our friends and family, new and old, near and far for their support.<br />
<br />
Thank you for sharing Maya's story when you wear your t-shirt each Friday, raising funds from necklaces, articles, yoga classes, lemonade stands and so much more.<br />
<br />
Suzette and I continue to work every angle to help fund this important research for those with SCAR7/TPP1 Deficiency. We believe strongly in this project and sharing not only our story, but the story of too many families impacted by rare disorders.<br />
<br />
As with every Friday, we look forward to seeing your #FightingForMaya selfies and videos. As a little motivation, here is a link to our ode to the Thursday before #FightingForMaya Friday. Enjoy. <a href="https://www.youtube.com/watch?v=KvMUYrY3mGs">https://www.youtube.com/watch?v=KvMUYrY3mGs</a><br />
<br />
Thank you,<br />
<br />
Beau and Suzette<br />
<a href="http://www.fightingformaya.com/">www.fightingformaya.com</a>bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0tag:blogger.com,1999:blog-2824559967983244468.post-46575091473455236992016-06-22T22:13:00.001-07:002016-06-22T22:13:48.806-07:00Two Heroes You Can Help Right NowFirst off, I'm really excited to share this story, <a href="http://observer.com/2016/06/two-heroes-you-can-help-right-now/" target="_blank">Two Heroes You Can Help Right Now</a>. It is written by Sheila Weller and does a great job of telling our story in a compassionate and thoughtful manner. I really appreciate the time that Sheila and the team at The Observer, in New York put into getting the #FightingForMaya story right.<br />
<br />
Second, things are starting to move quickly and I'm falling behind. This isn't a bad thing, and I knew it was coming, but my list of things to do is starting to become unmanageable. Again, a good thing.<br />
<br />
If you haven't already done so, please like our FaceBook page. <a href="https://www.facebook.com/fightingformaya/" target="_blank">https://www.facebook.com/fightingformaya/</a>. It has the most up to date information. We also have a website at <a href="http://www.fightingformaya.com/">www.FightingForMaya.com</a>. The website has all the information about our campaign and a great page with most of the FightingForMaya pictures. <br />
Check it out.<br />
<br />
As always, thank you for your continued love and support.<br />
<br />
More to come.<br />
<br />
<br />bjames358http://www.blogger.com/profile/13140319566080985531noreply@blogger.com0