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Going on with my kid . Its so isolating. Imagine if you have a child and they cant ever go outside. Can you see that . Not to get morbid, but i could potentially die. Tonight an extraordinary look inside their world. Shes more adventurous at night. It was like, oh, i have two bodies. We do a lot together. Shielded from the sun. He jumps from shadow to shadow. Hes always on lookout for the next safe place. Now in the spotlight. Out of the shadows. Welcome to dateline. Im lester holt. They live by night. They have no choice. Imagine dawn being something to dread. Daylight being dangerous. Only a...

Going on with my kid . Its so isolating. Imagine if you have a child and they cant ever go outside. Can you see that . Not to get morbid, but i could potentially die. Tonight an extraordinary look inside their world. Shes more adventurous at night. It was like, oh, i have two bodies. We do a lot together. Shielded from the sun. He jumps from shadow to shadow. Hes always on lookout for the next safe place. Now in the spotlight. Out of the shadows. Welcome to dateline. Im lester holt. They live by night. They have no choice. Imagine dawn being something to dread. Daylight being dangerous. Only a...

>> 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...

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? >> n...

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. our odds -- 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. >> just have him tested at birth, and this time we got our 75% chance, and he didn't have...