Before she was 7, Hannah had never seen a star. Then she had a breakthrough treatment at Children's Hospital of Philadelphia. Our donors help make breakthroughs like this happen.
Video: Blindness to Sight — Hannah R.'s Story
Cameraman: Can you introduce everyone in your family?
Hannah: This is my dad; this is my mom; that's my brother Jacob; that's my younger brother Matthew.
And who are you?
Hannah: I'm Hannah.
Amy Reif, Hannah's Mom: We were at CHOP getting an ERG for Hannah; one of the ophthalmologist pulled us into one of the rooms after the ERG was finished and essentially told us the ERG was flat and that confirmed the diagnosis of Leber's congenital amaurosis.
Chris Reif, Hannah's Dad: Best we can describe as she has no peripheral vision and really would look out of larger straws and that's … that was her visual field. And then add on top of that, the need of to have to be bright.
Amy Reif: When we first got her diagnosis I don't think we fully grasped it, but we just kind of said we need to just raise this child we have in front of us. And you know what she can see she can see, and what she can't, she can't.
Chris Reif: And she never caught fireflies. She couldn't see 'em. We would sit out at night and try to watch the stars; she wouldn't see them. She's being robbed of those experiences; it's plain — as simple as you can put it.
Amy Reif: Essentially, they make a good copy of the bad gene. They attach it to a viral vector and they inject it directly into the retina, and then the good copy of the gene starts to replicate.
Chris Reif: And then Hannah sees. That simple. The same day of surgery, same day of surgery.
Amy Reif: Went in that morning and was …
Chris Reif: Home by dinner.
Amy Reif: Home by dinner, yeah
That next morning she sat down at her seat at the table. And she has a little desk lamp that she has always used to help brighten up whatever is in front of her. And she came down and just automatically flipped on that light, and as soon as she turned it on, she pushed the light away and she started to cry because it was too bright. And no light has ever been too bright for Hannah.
Chris Reif: How do you thank the people that, that gave your daughter this wonderful treatment option that — what parent wouldn't give their own eyes for their daughter to see a sunset. And these people who've never met Hannah; you know, a very small percentage of the people that were involved with this have met Hannah and they committed their lives and their daily lives to this, and to say thank you. I just … we want to shout on mountaintops and then get people to understand it — their time and their money and their effort is so worth it.
Amy Reif: One night I was outside and there was a very bright star, and it was pretty low in the sky, and I was able to kind of, you know, point to the … you see the tree and the bush and, you know, look, look right above that. Do you see that little white light in the sky? I said, “That's a star.” She said, “I can see it.” That was the first time she ever saw a star.
Chris Reif: Pretty special.
Amy Reif: Yea, that was really awesome.
Related Centers and Programs: Division of Ophthalmology, The Children's Hospital of Philadelphia Foundation