Team Raphael

Our son, Raphael, was born in May 2012 with congenital hydrocephalus. We don't know what caused this brain defect, but we know he is perfect to us. His hydrocephalus has caused some additional challenges for our little boy, including several related brain malformations and cerebral visual impairment (the part of his brain that "sees" is damaged so it doesn't interpret the images his eyes send).

 

Raphael had three brain surgeries in three months. He works out weekly with his physical therapist, Dierdre, to help him with his physical development. He goes to speech therapy, and has a vision teacher that works with him. As hard as he is working, his brain is pretty severely damaged and it's hard for him to do everything we can tell he wants to do.


We found out about a program at Duke University, a doctor that is running a clinical trial for babies with cerebral palsy, giving them stem cell infusions with their own stem cells. We banked Raphael's cord blood when he was born just in case this was an option for him. It turns out that Dr. Kurtzenburg has seen such success with the stem cell infusions with CP babies that also have hydrocephalus, that for several years she has offered the stem cell infusions off-study for babies with hydrocephalus. We've heard some amazing success stories from other hydro babies.

 

Well, Raphael was accepted! The problem is that it will cost about $13,000 for the infusion, and there's no way to know in advance how much (if any) of that our insurance company will cover. He is scheduled for the infusion on Tuesday, Dec. 11, but we won't know how much it will cost us until insurance is billed. It's a big leap of faith, but we are convinced that this is what we need to do for our son.

 

So, we are asking for help. It isn't easy for us, but we'll do anything for our son. Any donations will go first toward the stem cell infusion, and then if there is any left over, it will go into an account that my aunt is managing to cover expenses that insurance won't cover. If you are in a position to donate, please consider this opportunity. Even if you aren't able to donate, but can pray for his health and healing, we appreciate that just as much! This page is called "Team Raphael" because we feel like there is already a team of support for our little guy, cheering him on with every new challenge. Thank you from the bottom of our hearts for being part of his team!

Donations

  • Janet 
    • $1,000 (Offline)
    • 102 mos
  • Anonymous 
    • $200 
    • 103 mos
  • Jo Turner 
    • $50 
    • 103 mos
  • Bob and Karen Henson 
    • $100 
    • 103 mos
  • Anonymous 
    • $100 
    • 103 mos
See all

Organizer

Shawn Grainger Henners 
Organizer
Lamar Terrace, TX
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