Hannah's Gene Therapy Journey

We started this page at the encouragement of family and friends who want to help by contributing to medical expenses we are expecting related to Hannah's gene therapy to treat LCA RPE65.

So many of you know Hannah's story and have been wonderful and supportive in helping us to raise money for VisionWalk and Foundation Fighting Blindness over the last 7 years since Hannah was diagnosed. We are asking for your help again. One more time. This time it will be going DIRECTLY to Hannah's medical care.

Bear with us as we tell her story once again.... In the first 2 months of life Hannah wasn't making eye contact, was only looking at bright lights and had bouncing eye movements. She was diagnosed with Leber's Congenital Amaurosis, RPE65 genetic mutation, at 3 months of age. This causes her to be legally blind. She struggles to see on cloudy days, indoors and in new surroundings. She cannot see at all in dim lighting or in the dark. She cannot see rainbows or stars in the sky, the detail on people's faces. She has difficulty seeing in school. It affects her every single day. We have been waiting for this gene therapy for the past 7 years, ever since she was diagnosed. This will change her world.

In December the FDA approved a medication called Luxterna, a gene therapy treatment specifically for LCA, the RPE65 genetic mutation. Spark Therapeutics has released the cost of Luxterna at $850,000 (to treat both eyes). At this time we do not know exactly how much we will owe but we DO KNOW we will likely need to put a lot of money out of pocket for things like the medication, hospitalization and surgery. We are hoping she will be able to have surgery this summer.

Our family and friends have been AMAZING and SUPPORTIVE throughout these past 7 years. Each one of you is a blessing in our lives. Thank you for your love and the support you continue to provide. Thank you for any donation you are able to give.

-Amy and Chris

Donations

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  • Karen Zipfel 
    • $50 
    • 31 mos
  • Anonymous 
    • $50 
    • 33 mos
  • Lee Zats 
    • $50 
    • 36 mos
  • Ben Altman 
    • $100 
    • 36 mos
  • Anonymous 
    • $300 
    • 37 mos
See all

Organizer

Amy Reif 
Organizer
Ambler, PA
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