Find A Way

Those were the words of Merril Hoge, NFL great, ESPN commentator and cancer survivor.

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.

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.

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".

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.

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.

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.

It was a weekend where THE STRUGGLE was celebrated.

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.

I have memories of families who...

Want it More and are willing to Find a Way.

Road trip'n with Ezra.

Nothing like a custom Omelette.

Ezra's first "real steak".  Thank you, Ruth Chris, Pittsburgh.  In case you are wondering, the Steak won.

Our #FightingForMaya Post

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.

It was great to visit with Dr. Emily.  Our family's friend for life.

Shelli... a reminder that nurses make the world go round.

Heinz Stadium

Fort Pitt Park

Fort Pitt Park.  Before it was Fort Pitt, the French held this territory as Fort Duquesne.  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.

 Fort Pitt

Bridge over Fort Pitt.

The beautiful view from our room.

A little Football History.

Sunrise over Manhattan.

Sunrise over Manhattan.

Sunrise over Manhattan.

Sunrise over Manhattan. Upside of a red-eye into Newark.

An Amazing Week

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 Texas Children's Hospital.  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.

#FightingForMaya

Below are links to the latest news about the approval and interviews from our local station.

https://www.youtube.com/watch?v=7OhimYD_c7I

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm555613.htm

http://www.10news.com/news/fda-approves-treatment-for-local-teen-with-rare-disease?autoplay=true

Pioneer(s)

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".

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.

From the brave world class medical care at 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.  

For this, I am eternally thankful.

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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."

Seriously, there is so much to say, and so few words.

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!!!

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."   Ambitious, perhaps naive, but possible.  Just ask my daughter, the "Pioneer".

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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.

During the toughest moments, as she struggles with this disorder,  she will say "I don't want people to look at me".  

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.  

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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.

As always, thank you for reading and for your love and support.

#FightingForMaya
www.fightingformaya.com

Feeling Thankful

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.

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 here.  The results thus far have been very promising in terms of this therapy slowing the progression in kids with the classic form of the disorder.

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.

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:

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.

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)

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.

Thank you for your continued love and support.