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Nightline, miracle of sight continues. Here now, bob woodruff. Other than the sun, ive never seen a star, ever. Reporter imagine a World Without starlight. Ive been told all my life, my vision is going to go. Its happening. And i get really scared. Reporter a World Without detail. I couldnt really see the castle because it was so dark. I immediately thought that something was wrong with her eyes. Knowing that both my husband and i gave her a mutated gene. Reporter tonight, two incredible journeys. Jesus, please fix my eyes. Amen. Reporter one revolutionary new drug. This was an eureka moment. Just knock your socks off. Reporter and a race against te time to stop the world from going dark. If i had the chance to save her vision, sign me up. I cant believe its finally happening. Happy birthday to you reporter 6yearold monroe lee dreams like many other girls, in visions of pink and princesses, but monroe isnt like most little girls, because her dreams just dont match her reality. I couldnt really see in the dark. Reporter does she explain this to her friends . What does she say . Monroe cant see in the dark. Reporter she suffers from a rare genetic disease that means she will eventually go blind, for a child who loves horse racing. He won he won, yes reporter and disney. Everything disney. That means never experiencing the glowing wonder of cinderellas castle at night. I couldnt really see the castle because it was so dark. Hi, pretty girl. Reporter monroes mom says she noticed immediately that something was wrong when monroe was just a baby. And it got worse. Monroe kept missing key milestones. So at 18 months shes still not walking. She did this scoot jump like crawl. Reporter it wasnt until she was 3 years old that three learned her diagnosis, a genetic mutation inherited from her parents. Only about 2,000 people in the whole country have it. It was scary. It was scary. I mean, knowing that both my husband and i gave her a mutated gene. Reporter but theres an extremely rare condition. We both blamed ourselves for a long time. Reporter while her family has given her the best childhood possible, they know time is precious. If monroe wanted to do it, we did it, because tomorrow wasnt promised. I didnt know if id wake up one day and she wouldnt be able to see at all. Look at mama. Monroe, she cant see. Reporter heather is going through the same thing. People always say they cant tell im blind. And i think that comes down to me being used to it and not letting me stop me from anything. Reporter for the 25yearold, life is one big blur. As a child, she was diagnosed with the same genetic disease that monroe has. It goes by lca. Ive been told all my life my visions going to go. Its happening, and i get really scared. I try not to think about it. Reporter the main issue with lca is light sensitivity. Heather cant see anything at night, a tough thing for someone who wants to be an astro physicist and study the stars. You have no idea what they look like. Ive only seen them in pictures, thats it. Reporter even on the brightest day, heather sees just a fraction of what other people do, using her guide dog luna to get around. I can see the trees where theyre at as blobs, things that are tall, and i can tell them different from the buildings. Reporter shadows and shade are a constant enemy. Ive tripped a few times and have a mini heart attack when you trip going downstairs. Reporter so are faces which makes it hard for her to recognize her friends. Theres been times i didnt know it was her, so i might make a little comment to say something. You didnt know that, did you . No, i never noticed that. When she was smiling, i could tell, but i see where her eyes are, but i cant see her eyes. Reporter heather uses a variety of tools. High tech. I have to invert for writing. Reporter and low tech. My felt tip marker. My recipes on my ipad so i can see it better. Reporter but her biggest, her fiance, christian. Ive tried to look at him super close in the sun. Never really seen him, never been able to see a blemish or anything like that on his face. She always looks for the best in things. I want to be with her knowing that shes like that. Im scared to not be able to see like christians face or our future childrens faces. I wanted to be a mother all my life. So i want to be able to at least see their faces. Reporter she was giving up hope when suddenly, she got a call. How did you get the word . I was asleep one morning and my dad called me. You awake . Theres a thing on the tv, a cure for the blind, check it out. I think its your disease. Reporter it all started in this medical lab in philadelphia with a groundbreaking new drug. For almost as long as theyve been married, doctors jean bennett and albert mcguire, an eye surgeon, have been searching for a cure for genetic blindness. At that point in time the technology did not exist. Reporter so if you were older, mothre experienced in th you would have known it was almost impossible. Its a good thing not knowing, because it would have been daunting. This is ridiculous. Reporter eventually, technology caught up. Dr. Bennett figured out a way to replace the gene that cause people like heather and monroe to go blind. Rpe 65. And dr. Mcguire figured out how to inject the replacement into the patients eye. The treatment now call called luxturna. Then the next thing, wouldnt it be great if we could make blind children see . Reporter heather quickly signed up. Dr. Aaron miguel will handle both surgeries. It is changing the course of the disease in a way we never saw before. Reporter while both operations will be the same, results will be unique, age is a big factor. Monroe who is 5 may have more improvement and stable improvements over the long term, compared to heather because of age may have lost more tissue. Reporter making the decision to risk what eyesight they have left is a big deal. Enter christian gardino. When i had you reporter millions fell in love with him on season 12 of americas got talent, where he earned the coveted golden buzzer. When he was 12, christian was chosen for dr. Bennett and dr. Mcguires clinical trial. Was this a tough call . No. Reporter whats the very first thing that you saw . I think it was my parents. Seeing my parents face in detail, that was pretty incredible. Reporter before surgery, doctors recorded christian trying to navigate a maze. You can see he has trouble staying in line, missing steps and running into barriers. After treatment, christian saw things hed never seen before, maneuvering around the obstacles, flawlessly. Massive, massive improvement, yeah. Id take anything of what i have now over what i had before. Reporter after months of waiting, its heathers chance to gain something shes always wanted. My hopes that im afraid to admit. To see a star and to be able to see christians face, actually see his eye color. I have a appointment at the vision center. Reporter it will take two operations. Her left eye is up first. Heathers dad and step mom arrive. Its still hard. Oh, boy. My vision doesnt define who i am, but its kind of made me who i am. I dont know how to not be the blind girl. Reporter the operation itself will last about an hour. The luxturna goes underneath the retina. We use a very fine needle to deliver a small amount of this medicine underneath the retina. The retsna is only a quarter of a millimeter thick. No room for error. Even a small tremor can make a difference. Reporter dr. Miguel threads that delicate needle and heathers father and fiance wait. I love you, baby. Can i have a kiss goodbye . Ill see you when you wake up, okay . Reporter for monroe, the surgery could be a chance at a normal childhood. She was afraid. She didnt know what to expect, but i do know she was scared. Just to see my baby willed back, praying that im making the right decision. Praying that the end result is going to be what we hope it will be. Reporter post surgery, they both have to wear a protective eye patch for 24 hours, and then that first moment of truth. Once she took that patch off of her eye, what did she see . Nothing. Reporter black . Yeah, it was black. She kept saying i couldnt see, i cant see. Were going to check your vision. Im scared to open it. You see my hand moving here . Reporter stay with us. There was no hesitation, i went straight to ctca. After my mastectomy, it was maddening because i felt part of my identity was being taken away. When youre able to restore what cancers taken away, you see that transformation firsthand knowing that she had options that she could choose, helped restore hope. My team made me feel like a whole person again. Cancer Treatment Centers of america. Appointments available now. Cancer Treatment Centers of america. 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We are seriously keeping up with the joneses. Keeping up with the fords. Keeping up with the garcias. The romeros. Patels. The wahhthewahh wolanskes. Right. No one is going to have internet like this. Xfinity makes keeping up with the joneses simple. Easy. Awesome. Want gigspeed internet . Weve got you covered. Or check out our other amazing speed options. Get started now for as low as 29. 99 a month for 12 months. Click, call or visit a store today. Nightline, miracle of sight continues. Here again, bob woodruff. Reporter heather is scared. Over the course of the next few days her life is going to change forever. For better or for worse. It was the longest night ever. Reporter the 25yearold is recovering from surgery, to see if the firsteverybody approved live gene therapy can restore her eyesight. Now were going to check your vision. I was really nervous when we took the patch off that day. Its just really scary. And when i couldnt see the nurses hand going back and forth, i kind of panicked. Do you see my hand moving here . No. Did i really try to fix my eyes and make them worse now . Hey, heather. Is this backfiring . So let me have a look. Very blurry. Very blurry. Look straight. Up and left here. Oh, that hurts. Excellent. Looks perfect. All the medicines absorbed. Okay. You do have an air bubble. And thats what causes the blurriness . Yes. The optics of the air is very poor, thats why its so blurry. Reporter dr. Miguel is not alarmed. He says the air bubble is normal and the day after surgery is always rough. But by the end of that first week she was reconsidering whether to have the second operation at all. To fix her other eye. I still cant see the same as before surgery, like my vision is still worse. Reporter but she decided it was worth the risk. Leather, this. Is dr. Miguel. I know youre just warking up. Everything looks so perfect, all right . Just like the other eye. Well let you relax and ill see you tomorrow morning. Okay. Great. Reporter nearly all the major improvements will happen in the first month after both surgeries. He likes it reporter and monroes progress has been incredible. I can see the stars what, baby . Ki see ti can see the stars reporter after surgery, i imagine its pretty shocking. Shes a whole new girl. Reporter born again . Born again. Reporter does she realize it . Oh, 100 . What do you see . Stars in the sky reporter the treatment, opening up a whole new world for the little girl, a world shed never seen before. Where do you want to go . Okay, show me the way, babe. Which one is your favorite princess . Um, belle. Yes, come on. Reporter in fact, on this day, monroe has gone to transform into a princess. [ appu ase forhe 6yearold princessess ride. Those are different. Those are always the same, honey. You just couldnt see them before. Everything was worth it. My baby could see. Reporter every minute, every dollar . Everything. Reporter all worth it . 100 . Reporter almost two months after surgery, heather was still struggling to really see the impacts. The Recovery Process is much harder for me than i expected. My peripheral has improved a lot. Reporter what can you see right now . We decided to test out heathers eyes in the dark. One of her dreams was to walk on the beach at night. Can you turn off the light completely . Just give my eyes a second. Just let them adjust a little. I see that light, it looks like its glowing almost, like theres reflection on the bottom . Whats over this way . Im not sure if theres something. Reporter those are two white lines of the waves. Holy moly. I see those a lot. I see a glare. Is that from the moon . Reporter yes. This is crazy. Oh, i hear the water coming. Reporter back up a little bit. Can you see it right there below us . I do, its like right that. I do see that. And theres a little second one coming. Reporter yes, exactly. Thats awesome. Is one of your dreams to see the stars . Oh, yes, definitely. Its always been a dream of mine. Just kind of waiting because im afraid i wont be able to. Reporter now she will get that chance. So i set up two telescopes. Reporter thanks to amateur astronomer john isaacs who set up some telescopes for us. He decides to start with the moon. If heather cant see something that large through a scope she will never be able to see a star. Oh, i see it. The defined shape. Its amazing. Reporter now the real moment of truth. John repositions to look at sirius. The brightest star in the sky. If you have 20 20 vision you clearly see the star here in our video with the naked eye. For heather, her only hope is through this telescope, after 25 years of waiting. So are you seeing it yet . Find gray spot again. Oh, i see it you do . Are you okay . Yeah. I see i wacant even talk. It doesnt seem real. I cant believe im seeing a star for the first time ever. Oh, my god. Its amazing. Okay. Thank you. Yeah. 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