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tv   Dateline  MSNBC  February 3, 2018 1:00am-2:01am PST

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there are many it's attacking. it's clear he's doing an attack on the department and one person says i'm not sure i have the president's confidence. he's doing everyone -- >> strength in numbers. thanks for your time. that is "all in" for this evening. sheer exileration. pure joy. there's nothing like the freedom of summer camp and there's no other camp like this. >> feels like i'm a normal person. >> here, night is day, day is night. because for these kids, the sun is the enemy. >> you can see when people are pointing. >> yeah. >> that must be hard. >> called names. >> someone has told me that i'm
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>> they live with rare and baffling conditions. >> like what the heck is going on with my kid? >> it's so isolating. imagine if you have a child and they can't ever go outside. >> i don't think people understand the severity of it. not to get morbid, but i could potentially die. tonight, an extraordinary look inside their world. >> she's more adventurous at night. >> it was kind of like oh, i have two buddies. we do a lot together. >> shielded from the sun. >> he jumps from shadow to shadow. he's always on lookout. they live by night. imagine having no choice, dawn being something to dread, daylight being dangerous. a handful of children have disorders like these. even a few minutes in the sun can cause serious harm. you'll meet some remarkable kids and their families who share their stories. you'll see that they do have
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light in their lives. it just comes from within. here is kate snow. >> most people would describe this day as beautiful. clear, blue skies. warm sunlight. you could gaze out into these waters for hours. that is, until your eyes catch a glimpse of this young girl, enjoying the day the only way she can. >> i like going outside to get fresh air instead of being stuffy inside. >> covered from head to toe, wearing a shiny face shield that seemed to reflect an entirely stare. >> her name is mackenzie. she lives here on an island off the coast of vancouver, canada. because of a unique medical condition, she has often worn this face shield.
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we first met her last year when she was 13, very shy, a little guard. >> some of them are looking. i don't know if it's because of the camera or what you're wearing. do you notice people looking at you? >> i do but i try not to focus on that. i kind of look at the ground so i don't really focus on people. >> you can see when people are pointing? >> yeah. >> that must be kind of hard. her outfit certainly wasn't what her mom, shannon, had in mind on the day she found out one of her twins was a girl. >> what did you dream you would do together? >> the dresses. kind of a lifetime of dress-up and makeup and everything else and shoes, hair, all that. >> but her vision of mckenzie's future would fall apart quickly and dramatically. it all started when mackenzie was almost a year old. shannon and her husband, shawn, noticed a rash on her face. >> it started to spread down her face and then spread down on to her lip and her chin. >> mackenzie's pediatrician didn't know what it was. shannon took her to two different dermatologists. they, too, were baffled. >> stuff that we're using in the house. household chemicals or something like that.
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i remember feeling helpless for that seven months. >> mackenzie also cried more, slept less than her twin brother. but as these difficult months went on, shannon noticed a pattern. >> it actually gets worse when we take her outside. >> she told mackenzie's doctor who then ran a special blood test and finally the doctor discovered the cause of mackenzie's bewildering illness. the sun. >> i was terrified. you don't expect a doctor to tell you that your daughter is allergic to the sunlight. >> technically, it's not an allergy. though people shorthand it that way. it's known as erythropoietia protoporphyria or epp. it's a rare genetic disorder that's extremely complicated. though the doctor's instructions to shannon on the day mackenzie was diagnosed were very clear.
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>> it was a matter of taking off my jacket to cover her. >> you weren't even prepared to cover her up in the car. >> no, not at all. my mom and dad in i in the elevator scrambling to cover her up, get her in the car and get her home. >> that was 13 years ago. and mackenzie has avoided the sun ever since. much of that time, mackenzie has spent the time in her room with her thick, black curtains drawn. >> one of the worst things is someone calling me a vampire. >> she suffers extreme pain, itching and swelling if the sun hits her skin for too long. >> it will be like a burning kind of feeling, like you got stung by a whole bunch of bees. >> some patients said it was like dipping their hand in boiling water or being stabbed by a hundred knives. >> one of the few doctors in the u.s. who specialize in treating epp. she estimates there are fewer than 500 diagnosed cases in the united states.
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though she believes many more are undiagnosed or misdiagnosed. it can be life threatening. >> small percentage of patients will get liver failure, from the literature about 5% or so. >> long-term complications from epp are not entirely clear. one thing is. once a full-blown reaction to the sun starts, it's extremely painful and can last for days. this video shows a young person with epp after too much sun. >> what's burning? >> she's in the bath trying to lessen her pain but it's not happening. >> you can't just take a tylenol? >> you cannot take a tylenol. even stronger pain medications don't really work for the pain. >> 9-year-old brady knows all about that. for the last five years, he hasn't jumped in a sunlit pool or dashed out on to the playground for recess.
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>> do you remember what it was like when you didn't know and you stayed out in the sun? >> yes. it was not pleasant. because i didn't know what was happening. >> neither did brady's mom, kristen. >> i was thinking what the heck is going on with my kid? you go to the e.r. with someone who is writhing in pain but there's nothing visible. >> that's the thing with epp. there are often no visible signs during or even after a reaction, which makes epp even harder to diagnose. >> and it was actually his pediatrician that had referred us to a pediatric dermatology specialist. he had seen one previous case. >> how lucky were you that that doctor had happened to see another case? >> so lucky. >> every case of epp is different. brady feels the tingling and stinging coming on after less than a minute in the sun. but he can tolerate shade and wearing a thick, long-sleeved hoodie gives him enough protection. >> you've seen him, he jumps
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from shadow to shadow. >> he does. he shadow hops. you walk out any door out of school, out of the car and there's always a line. here is the shade and here is the sun. and brady stops. he's always on lookout for the next safe place. >> safest place for brady, of course, is indoors. so, every day at school during recess, brady picks three friends to join him in the school gym. >> i feel bad for him because he doesn't get to do what like others get to do. >> does it ever bug you that you have to sit in the shade? >> sometimes. i wish i could just be like them, my friends. >> brady and mackenzie. their parents not only have to shield them from the sun but also from the stares and pain of isolation that sometimes hurt even more. growing up with such little light makes their future that much harder to see.
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it's a journey that will require more strength than creativity than these families ever imagined. coming up -- is there a way to let these kids into the light? >> outside all the time with short sleeves on, and there's been no reaction. >> a tremendous ray of hope. with advil's fast relief, you'll ask, "what pulled muscle?" "what headache?" nothing works faster to make pain a distant memory. advil liqui-gels and advil liqui-gels minis. what pain? advil liqui-gels and advil liqui-gels minis. my healthy routine helps me feel my best. so i add activia yogurt to my day. with its billions of live and active probiotics, activia may help support my digestive health, so i can take on my day. activia. now in probiotic dailies.
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because she has a condition called epp, 14-year-old mackenzie has to apply special sunblock before she walks out of her house. she wears uv resistant clothing and a hat since certain overhead lights can also cause a painful reaction in mackenzie. while she needs her face shield for prolonged sun exposure, her special hat has protected her every single day since she was 2. >> i'm the most embarrassed when we have to do the national anthem and i'm the only one with a hat on and i can't take it off and everybody stares and i'm like, oh, no. >> since she was about to start high school, mackenzie, so shy already, had more fears that more kids would stare. >> we get to go on a little tour. >> yes, we do. >> her mom had more concerns, meeting with the principal to make sure the windows and lights were okay for mackenzie. the meters were checking for ultra violet light. >> i'm getting a one.
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what are you getting? >> eating lunch in the sunlight on a bright warm day, mackenzie has never done that. >> if i could not go out in the sun, what is life? >> isn't there one girl at school? >> she can't go in the sun. >> she's like allergic to it so she has to have special lighting. >> i would like to go out and eat with my friends. unfortunately i have to stay in here. luckily, some of my friends are very thoughtful and they stay in here with me. >> but when the sun goes down, mackenzie and her friends can go anywhere they want. shut out from the sunlight, boxed in all day, mackenzie finds her radiance at night. >> i make sure i have like a night wedding. >> she's more adventurous at night. >> at home in bethesda,
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maryland, brady's life is similar. he, too, can play more freely after dark. >> throw it as hard as you can. >> i throw as hard as i can, i'm going to hurt you. >> please don't. but he doesn't seem to appreciate the night as much as mackenzie does. that's because brady would rather play in the daylight and his mom, kristen, thinks there may be a way to bring him out of the shadows. >> all i want for my son is that some day he may be able to feel the warmth of the sun. >> kristen is hopeful. there's an experimental treatment out there designed to give people with epp temporary protection from the sun. the drug, afamelanotide. each dose implanted beneath the skin will increase skin pigmentation for two months. basically it would give brady a medicinal tan. >> a protected layer. >> like a coat of armor. >> great way of looking at it. >> the drug hasn't been
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submitted to the fda for approval, kristen has been telling her son about the treatment since it went through a drug treatment five years ago. how does it make you feel inside when you think about the possibility of having a drug that could help? >> makes me happy. >> brady's mom got to know a young man named andrew terrell, who had the treatment for several months during that drug trial. he has been waiting for the drug's availability, too. >> i coached baseball that summer. i was outside all the time. there was no reaction. >> we arranged for him to speak with brady about the implant. >> how did it feel? >> it was great. so it was really easy to get. 20 minutes in the doctor's office. it works for two months. i got really, really tanned. >> does it hurt? >> when they injected it? >> yeah. >> it hurts for a couple of seconds maybe but so worth it. how did you hear about this new treatment? >> my mom told me. when i get it, i can finally go
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in the sun for a while. >> the implant seemed to work for andrew, but it's never been tested for children. >> do you ever worry that even though the drug shows so much promise that maybe it wouldn't work in brady? >> i've never thought about that. haven't gone there in my mind. >> what if you're giving him false hope? >> that could be. that could be. i hope not. brady did a picture at school of a kid on a lounge chair and a huge sun in the background and the only words on it were hope. this is what he wants. >> this drug might help mackenzie, too, since she has brady's same condition. her mom, shannon, has a different attitude. she doesn't want her daughter to hold out hope for a treatment and certainly not for a cure. >> i don't want her to get her hopes up and then just never see that light at the end of the tunnel. i want her to live with it and live healthy with it. >> she's taught mackenzie to know her limits, like on this
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foggy morning during pe, when mackenzie played for about 30 minutes with just her special hat and sunblock on. >> i was able to play today because it was not too sunny and cooler this morning. >> but back inside, she knew her mom would want her to sit under that canopy. >> do you ever worry that maybe you're being too overprotective? >> i don't think there's any such word as that when you're a mother. i would rather be too cautious than not cautious enough. >> even if it means she has to wear a lot of gear and people point fingers? >> i would rather people point fingers at her for the next 50 years than her be sick. >> there is one place where no one points fingers, no one stares, where mackenzie and brady can feel like any other kid. a place full of life. in the dead of night. coming up -- >> it feels like i'm a normal
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person. >> and later -- >> the night is kind of special to me. >> her name is paris. and her struggle -- >> not to get morbid, but i could potentially die. >> life and death, every day. this is charlie. and this is charlie not coughing because he took delsym 12-hour. this is charlie not coughing while trying not to wake zeus. this is charlie not coughing while sitting very still. and this is charlie not coughing while getting a little too into nana's party. because he took delsym. nothing lasts longer for powerful cough relief. delsym. the joy of not coughing. and don't forget kids 4 and up. delsym is #1 pediatrician recommended. fixodent plus adhesives. there's a denture adhesive that holds strong until evening. just one application gives you superior hold even at the end of the day fixodent. strong more like natural teeth.
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it was the middle of the day in the middle of july. soft, grassy field of any summer camp should be filled with the voices of children by now.
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but at this camp up instate new york, the only sound came from the wind and the trees. but inside, we found them. chatting in the hallways. taking a nap. one kid was still in bed at 11:00 am. though they had legos to build and pictures to draw, it often seemed they were just killing time until, finally, the stars came out and the moon washed over them. this is a camp for kids who can't be outside during the day, can't play in the sunlight. a camp where everything glows. where the lakes are as dark as the night and brady jumped right in. camp sundown started 20 years ago by parents of a child who also couldn't be in the sun,
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flipped the world upside down. kids play when they should be in bed, sleep when they should be inside. no one here gets a lot of rest. mackenzie flew almost 3,000 miles to be here. >> i like to come out and play softball. it's really fun. >> brady has been to the week-long camp four years in a row. it was here where he realized for the first time that he wasn't alone in the dark. >> it feels like i'm a normal person. >> it was close to 2:00 am when the campers were coming back from a field trip. >> i didn't think the fireworks show would be that good, but it was really good. >> while mackenzie and brady have epp, many here have different illnesses that make them sensitive to the sun. the camp welcomes family members, too, like mackenzie's twin brother, dawson and brady's two older brothers. when the sun comes back up, every kid at camp has to go back inside.
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>> i had one wish, i would probably want to stay at camp sundown with all my friends. >> kids here say the best thing about camp is that everyone gets it. so when one camper talked about wanting to play football for his school one day, it became a conversation that could only happen here. >> my doctor said no, but i'm going to do it anyway. >> you know, if you crack your helmet, the sunlight could go through that and right to why your face. >> remember that visor i wear? >> yeah. >> i could take an old one of those, stretch it out and put it under it and tape it so it will cover up the little slits. >> i wouldn't take the risk. >> kevin, that's you. i just want to play sports wherever i go. >> when camp was over, mackenzie was back in her face shield, back in the harsh reality of the daylight as she headed home. her mom, shannon, recalled one
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time at the airport when a group of people just wouldn't stop staring at mackenzie. what did you say? >> i just said how dare you? it's rude. it's rude and it's ignorant. she has a condition and if you had any class, you would ask instead of pointing. those are the days i wish i could trade places with her, in a heartbeat. >> shannon says her shy, quiet daughter would rather hide behind her shield than talk to people about her condition. she thinks mackenzie needs to learn how to speak up for herself. >> her father and i won't always be there to explain or to help people understand. that's why i tell her it's important to find her voice. >> while mackenzie was trying to find her voice, brady, back home with his mom in bethesda, was still dreaming about this vision and waiting for that experimental treatment that could make being in the sun a reality.
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>> it's his hope. i let him have that hope that some day he will get to lead a normal life without this struggle. >> while children with epp do struggle, there's another disease out there that's more serious, more deadly. for this young girl named paris, every drop of sunlight that touches her skin is a matter of life and death. >>y think people understand the severity of it. not to get morbid, but i could potentially die. >> going out at night is the easiest way for paris to avoid the hot desert sun of st. george, utah. that's where her family's remarkable story begins, a journey with twists and turns that no one could have anticipated. >> we had to flip things upside down. >> jennifer and todd feltner's dream was to have a large family. their first child was parker and then came paris, two years later. she was an adorable baby. but at 6 months, she had freckles. >> we went back for the 9-month checkup and that's when the
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doctor said there are more and they're darker. >> they were referred to a specialist. >> we were looking things up in books. they were calling people on the phone. and the longer we sat there, the more our hearts dropped. >> then finally a diagnosis. >> paris tested positive for xp. and that's the last thing i heard. >> xp is xeroderma pigmentosum. >> dr. barry cunningham has been treating the rare disorder for years. any one of us can get skin cancer. in fact, one in five of us will. but for paris, who had to wear this full bodysuit after she was diagnosed as a baby, the odds are much worse. she lacks the enzyme that repairs dna damage caused by sunlight every day. that means she's 20,000 times more likely to develop cancer when unprotected.
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>> if you have a kid who is wearing a hood and some joker on the playground comes over and rips the hood off as a joke, can that damage in just a couple of minutes -- >> yes. >> -- cause cancer? >> yes. absolutely. >> when children with xp aren't protected early, the consequences are severe. >> oh, my goodness. >> dr. cunningham showed us photos of some of her young patients in guatemala, disfigured from numerous skin cancers. >> oh, my goodness. it's hard to look at. >> i really thought it was a death sentence and she would be lucky to live into her teens. >> shielding paris from the bright utah sun was the only way to save her. but, believe it or not, that was only the first of many challenges this family would face. coming up -- one child with a deadly condition. would they risk having another? >> they tested. >> and another. >> i said you're crazy. no!
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like a lot of 17-year-olds, paris loves to shop. >> hold that up. >> she says she could spend hours in a mall. but when a sidewalk sale brings her outside we're reminded why paris isn't like most teenage girls. because she has xp, paris has to protect herself from sunlight. >> i really do feel like the odd one out when everybody is in their shorts and t-shirts and i'm sweating to death. >> her hood may be uncomfortable to wear on a hot, sunny day in utah, but it's clear uv resistant plastic is a huge breakthrough for people with xp and a big improvement from that first suit she had to wear. but wearing that hood has gotten harder for paris as she has
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gotten older, especially with all the social pressures of high school, dating and dances. >> someone has told me that like i'm ugly in my hood. >> someone said that? >> it hurts really bad because sometimes i do think that. >> but no matter how self conscious she feels, paris knows how dangerous it would be to take off her hood. >> anything that you notice on your skin? >> she sees a dermatologist at least twice a year to check for skin cancer. >> on my nose, can you see that? >> yeah. >> on this visit, it was nothing serious. but when paris was 8 she felt a bump on her head. she was so frightened of going to the doctor that she didn't tell her mom about it for weeks. >> i was so scared. i was so scared. if i would have left it for a long time, it could have spread. >> it turned out to be melanoma, the most deadly skin cancer. though it was successfully removed, the scare made paris even more vigilant. >> my friends that i've known for years, they don't understand that if i did not wear my hood, i could die from skin cancer.
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>> having a child with such a serious disease made it hard for jennifer and todd to think about having another child. and they didn't, for five years. but as they saw paris thriving as a young girl, despite her limitations, they began to think again about their dream of a big family. >> i don't know. we just -- we always knew we wanted more than two. >> the couple got advice from a geneticist. since both mom and dad carry a defective recesssive gene, the doctor said their children have a one in four chance of having xp. >> basically you have a 75% chance of not having another one with xp. >> but you have a 25% chance. >> 25% chance. >> that your next baby is going to have the same thing. >> yeah. so we had to be prepared. >> when paris was 5, jennifer and todd, devout mormons,
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decided to have another child. >> i had prayed and i had felt like my answer was everything is going to be okay. >> she had a boy named paxton. and at birth, he tested positive for xp. >> i did go through a time where i said, i did this to him. you know, it was. it was a feeling of guilt. i have to say that i was pretty mad at god for a little while. it tested my faith. >> jennifer knew she would be tested every day now with two of her three kids with xp, she decided no more children. >> three was good and we were happy and then todd came to me and he said, we need to have another baby and i said oh, my gosh, you're crazy. no! >> i'm an accountant. i think analytically. we have two. i just don't think we'll have another child with xp. >> oh, okay. well, here we go again. >> nine months later, peyton was born. their fourth child. and they had him tested
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immediately. the doctor called with the results. >> he said, i can't believe that i have to tell you this. and i said well, you don't even have to say it now because i know. >> peyton also tested positive with xp. >> and i just sobbed. and i just couldn't believe it. >> did you think a lot of people are going to hear your story -- >> yeah. >> and think, why? >> are you stupid? yeah. >> what do you say? >> i say you have to meet my kids. >> growing up with xp together, paxton and peyton were inseparable, spending hours in an enclosed playground off their basement. >> you and your brother are so close in age, do you do a lot together? >> yeah. it was kind of like oh, i have two buddies. >> paris and peyton. >> yeah, paris and peyton. >> it was then that jennifer and todd chose surgery in order to prevent another pregnancy. >> i thought okay, i'm done having kids. i'm going to get my body back in
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shape and just couldn't get that belly to go away. and then the thought hit me -- oh, it could not be. coming up -- more news from the doctors and no one can believe it. >> i've had this for five years of my life and now you tell me? >> a life-changing moment for all of them. ♪ good is in every blue diamond almond. and once good gets going, there's no stopping it. blue diamond almonds. get your good going. official snack nut of the u.s. ski and snowboard team. psst, we are the new light & fit with zero artificial sweeteners. zeroooooo!! ooh eye contact. ♪ ♪ yeah girl, 13 grams of protein. yaaassss! we're the new light & fit greek nonfat yogurt with zero artificial sweeteners. my "business" was going nowhere... so i built this kickin' new website with godaddy. building a website in under an hour is easy! 68% of people...
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after three of their four children were diagnosed with xp, a deadly genetic disease that forces their children to avoid sunlight, jennifer and todd feltner said they were done taking risks. >> we should not go to vegas. we don't roll the dice well. >> but despite taking measures to avoid a pregnancy, jennifer discovered she was carrying a baby yet again. though there was a 75% chance that her child would not have the disease, jennifer was almost resigned to her family's extraordinary bad luck. >> had him tested at birth and this time, we got our 75% chance and he didn't have it. >> no xp? >> no xp. >> this is their youngest child,
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porter, who loves to laugh. but astonishingly, the world of the feltners would flip over yet again. national institutes of health asked the feltners to come to their headquarters so the doctors could study their unusual family, with three kids with xp. at that point paris was 13, paxton was 8 and peyton. doctors at nih discovered something unexpected. they ran more tests and then called the family with some incredible news. >> and they said peyton does not have xp. >> does not? >> peyton, the third child diagnosed with xp was actually misdiagnosed at birth. >> as crazy as it seems, it's another devastating day. >> he does not have xp? >> right. he does not have xp. >> why is that devastating? >> you would think that he would be so happy that i am going to have to tell two of my children that they're not the lucky ones. >> jennifer and her husband decided to tell the two that had xp first, paxton and paris.
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paris cried. paxton worried he lost his best friend to the daylight. >> i felt like we're not going to get to do a lot of things together anymore because he's going to be outside. >> then they told peyton, who was just 5 years old at the time. >> i was like, i've had this for 5 years of my life and now you tell me i don't have it? >> so we said, do you want to go outside? he said, okay. >> and my friend was playing right over there. he yelled at me and he said, peyton, what are you doing? you don't have your hood on. i know! i don't have xp anymore. and shocked, kind of scared and happy. >> it was scary? >> yeah, it was scary. >> because that was all you ever knew.
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>> yeah, really, that was all i ever knew, was to stay out of the sun. >> this is a disease that has no cure. and yet you are maybe the closest anyone has ever come to having a child cured. >> yeah, yeah. yeah, you're right. >> the whole family was watching this magical scene of peyton playing openly in the sun for the very first time in his life. everyone except one person. >> i thought i could do it. you know, i thought i could stand there and watch him.
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at the last moment i just couldn't take it. so i just slipped out and went to my room and started crying. i know how awful it can be to have this disease, you know. so i was so happy that he was able to play baseball. he's able to run out with his friends. he's able to, you know, do all the things that we aren't able to do. but then i was sad because it wasn't me. it kind of hit me that, oh, i'm stuck with this my whole life. >> a lot of times when i was little, i would dream about being out in the sun, you know. run and play with my friends outside in the daytime. but now i don't really dream about that. >> once in a while, paxton says
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he still feels a little bummed about peyton's new life in the sun. >> i miss having a brother that has xp. i'm happy for him. >> when he says that stuff, it kind of makes me like want to have xp, but i don't wish i had xp. it feels kind of -- >> kind of guilty? >> yeah, guilty a little bit. >> paxton used to wait for the sun to go down with his brother but now he waits alone. >> what's it like to sit here and kind of wait? >> you get really bored. and you just wish you could go out right now. >> without protective gear on, paxton can't safely measure the intensity of the sunlight himself. so i checked it, using his light meter.
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brady and mackenzie spent this past school year the way most kids do. going to class. hanging out with friends,
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looking forward to summer camp. but with one big difference. they did it while avoiding the sun. because sunlight exposure can cause a painful reaction in kids with epp, brady was still hoping for that experimental drug, the one that would darken his skin and make it more resistant to sunlight. do you think one day you'll be able to get that medicine? >> yeah. >> and then brady and his mom heard some encouraging news. the drug was finally approved last fall. but in europe. >> it opens the door that had not been opened before. so, it's amazing.
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>> the drug still wasn't available for kids. >> welcome to terminal four. >> she was delighted to find out that their new friend, andrew terrell, was getting on a flight. >> i'm heading to switzerland. i'm very excited to get back on the treatment. >> when andrew was part of a drug trial, each treatment protected him for two months. it worked so well, he didn't think twice about traveling 4,000 miles to zurich to get another implant. >> are you okay? >> totally painless. >> two weeks later, kristen and brady received a skype call. >> i hear you went to switzerland. >> yeah. just got back last week and i got the drug treatment. it's great. i'm actually outside in the sun now. >> are you in central park? >> yep. i'm right here. lots of people out enjoying the day. >> do you want to ask him if he thinks you should do it some day? >> should i do it some day? >> absolutely. as soon as you have the chance.
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i'm hoping it comes to the states soon. >> the drug is expected to be submitted for fda approval in the states in 2016. since there's no guarantee that the drug will ever be developed for pediatric use, brady was looking forward to one special birthday. his 18th. >> it's eight years and 14 days. >> sounds good. >> i let him do the countdown
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but i don't know what's going to happen. >> it lasts for two months. >> i hope it was really good for brady to see what can be for him. >> on the west coast of canada, shannon was also thinking about her child's future living with epp. she's sometimes concerned about mackenzie's extreme shyness. she thinks her condition has a lot to do with that. >> it definitely made had harder for her to come out of her shell. >> put our hands together and please welcome mackenzie. >> it was a big day at school when mackenzie decided to do something she thought she could never do. speak in front of her whole class. >> most of you guys know me. but if you don't, i'm mackenzie and i have epp, which means i'm allergic to the sunlht and ultra violet light. there's a canopy on my chair that protects me from ultra violet light in the room so i can stay here. >> it was the first time she gave a speech about what she has and who she is. she did it to raise awareness about camp sundown. >> and we do fun activities only at nighttime. and the mosquitos are really bad there, but if you want to know more about the camp you can check online.
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if you have any questions for me, i would be happy to answer them for you guys. >> it wasn't as bad as i thought it would be like. everybody was listening and i didn't think they were going to. >> they were all listening, weren't they? >> i can't go to some of his games. i just go to the night ones. it was hard at first. now i've gotten used to it. >> i said you know what it was like firsthand to live with xp. and after you've played outside with your friends all day and it finally gets dark and paxton can go outside, i want you to make yourself go outside. there have been a few times when he has been watching tv and he has been outside and i'll say, peyt. and he'll say, i know, mom. i'll get my coat.
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>> dr. cunningham thinks a cure for xp is possible some day. >> patients of xp are missing an enzyme. it's completely plausible that that enzyme could be created and applied to the skin. i'm extremely optimistic that in my lifetime there will be a cure. >> paxton and peyton's sister, paris, now a high school junior, also hopes for a cure. it hasn't been the first thing on her mind lately. she was still wondering if someone would ask her to the prom. >> sometimes i just think, what if somebody doesn't want to ask me because i have xp? >> and then one day, paris got her answer. >> i have some exciting news. i got asked to junior prom the other day. and i'm really excited about it. i think it's going to be a great time. >> i'm in love with this dress so much. >> i think it makes me feel a lot more normal just because it's something that everybody
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else does and it's something that i can do that everybody else does. because i can get dressed up. i can, you know, go on a date like a normal person. >> you're not nervous at all, are you? >> just a tad. >> i think that if i can make these adjustments and do when i need to do to make myself safe -- >> no, no, not yet. >> it's a good indicator that i can deal with the changes and roll with the punches. >> i metered outside. it's a 25. so she is going to have to wear her hood to get out to the car. >> i think i'm going to just kind of not stress about something that doesn't need to be stressed about right now. >> why stress on tomorrow when tomorrow hasn't even come? >> did you see her when she went to the prom? how did she look? >> she looked beautiful. >> you would never recognize that she has xp. >> yeah. for real, though. >> these kids all hope for a brighter future, but look around
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at where they are now and you realize, they're already in a special place that's just as bright. that's all for this edition of "dateline." thanks for joining us. . i'm craig melvin. and i'm natalie morales. and this is "dateline." i'm craig melvin. >> i'm natalie morales. >> and this is "dateline." i was robbed of my sister. i had to grow up without one. in an instant she was gone and it changed everything. >> she dreamed of a career solving crimes, but crime claimed her first. >> my daughter, please, please, don't let this be true. >> home alone on


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