Sunday, November 13, 2016

A #FightingForMaya Update


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.

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.

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.

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."

Little did I know.


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.

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.

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.

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.

That moment and conversation meant a lot.


As of this week:

- We have sold over 900 #FightingForMaya shirts;

-Raised over $13,000 from shirts alone;

-Over 600 people have either made a contribution directly to the SCAR7 research project at Texas Children's or bought a shirt;

-The FightingForMaya blog has been viewed over 18,000 times;

-We are six thousand dollars shy of hitting our year end goal of raising $100,000 of the $200,000 for the SCAR7 research project at Texas Children's Hospital.


Our year end ask, is that you consider making a donation to the SCAR7 research project at Texas Children's.  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!!!


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.

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.

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.

Thank you for reading and for your continued love and support,


1 comment:

  1. We love you so much Maya! I couldn't be more prod of how strong you are and I am so proud of all of the amazing work your parents are doing for the whole rare disease community. Hope to see your sweet smile soon!