This is one of those days when the written word fails to capture it all....
Two 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.
We tearfully said "Thank you for saving Maya's life..." to the doctors and nurses of Nationwide Children's Hospital.
Hopefully, we left Columbus better than when we first arrived.
Today, 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.
Though 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.
Maya 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.
Below are a few pictures from the last couple of months.
Thank you for your continued love and support.
#FightingForMaya
Maya you are such an inspiration! Our prayers are sent to the universe for a quick FDA approval!
ReplyDeleteThank you, Linda
DeletePrayers are happening! Thank you for the update! Love the picture and love Maya!
ReplyDeleteThank you.
DeleteOur prayers and thoughts with you Maya. We wish you the best and hopefully all prayers will be answered for the FDA approval.
ReplyDeleteThank you.
DeleteSending prayers and more prayers from Seattle for FDA approval and for Maya, her family and her caregivers.
ReplyDeleteThank you, Marita. Please give our best to your family.
DeletePraying continually for your family. Praying that these infusions will help Maya and others. May God fill you with peace, comfort & wisdom in every moment. Katrina
ReplyDeleteThank you, Katrina. We really appreciate your support.
DeleteMy heart goes out to you and your family. I will definitely lift you up in my prayers. Thank you for sharing these great pics of Maya...Haven't seen you all since the YMCA soccer days! Kim Leake
ReplyDeleteThank you, Kim. It has been a long time.
Deletepraying hard.. and giving thanks.. for the current treatment.. for closer treatment.. for the energy and hope you bring to so many. The work you do makes ripples forever and touches so many you'll never know. Thank you, Beau, Suzette and Maya. Much love to you all. LOVE the pictures!! Clare Schexnyder
ReplyDeleteThank you, Clare.
DeleteThank you for sending me the updates! Love seeing all the pics and smiles of Maya! Although I am no longer involved with NCL"(. I hold everyone dearly in my heart! Sending lots and lots of prayers that the FDA says YES!!! <3 Kellie Burke
ReplyDeleteSo glad to hear about the opening of the new facility at CHOC - and that Maya is doing well!
ReplyDeleteKnowing that the FDA is approving this treatment in no time. - Brent
So touched. And we absolutely LOVE all these photos!
ReplyDeletePraying is powerful as it changes us who are praying. Praying for the FDA approval for the use of this treatment on going for all who will benefit too. Maya is captain of a team doing amazing discoveries. Thank you for your Leadership. Hugs! Photos are enlightening.
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