Nola, our 1 year old daughter, has Sanfilippo Syndrome A.
Children suffering from Sanfilippo are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death before they even reach their teen years.
There is HOPE! A MIRACLE on the horizon!
Gene
therapy clinical trials at Nationwide Children's Hospital (Ohio)
scheduled for 2015. BUT these clinical trials are
still lacking necessary funds.
We hope to see Nola have the opportunity to become the woman she was created to be. We are desperately hoping that we will not lose her to this devastating disorder.
Parent/Patient Advocacy Groups & Foundations around the world are
diligently working to make our hope & the hope of so many other
parents of children with Sanfilippo Syndrome a reality. We are so
grateful for the work they have accomplished so far & want to do
whatever we can to fund the medical research and clinical trials that
could possibly save the lives of our children.
Please consider supporting Team Nola & be part of the MIRACLE!
Your support gets us one step closer to making our hope a reality!
Thank you!
Shiloh & Derek Carter
TeamNola4ACURE@gmail.com
https://www.facebook.com/TeamNolaCarter
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