Blindness to Sight: Hannah R.’s Story


>>Can you introduce everyone in your family?>>This is my dad; this is my mom; that’s my brother Jacob; that’s my younger brother Matthew.>>And who are you?>>I’m Hannah. ♪♪>>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. ♪♪>>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 it to have to be bright.>>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.>>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. ♪♪>>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.>>And then Hannah sees. That simple. The same day of surgery, same day of surgery.>>Went in that morning and was …>>Home by dinner.>>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.>>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.>>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.>>Pretty special.>>Yea, that was really awesome. ♪♪

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