Sunday, August 26, 2018

A FightingForMaya Update: I Had a Good Day!!

"I Had A Good Day!!"

This was the text I received from Maya one recent afternoon.

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.

It was Maya's message, that reminded me that we had made the right decision.


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.

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).

We're doing well.


How is Maya?

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.

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.

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.

What's next?

We are approaching our final year of the research project at Texas Children's Hospital.  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.

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 here. 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.

As always, once you receive your shirts, feel free to post a selfie and tag it with #FightingForMaya. 

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.

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


No comments:

Post a Comment