daughter katie was first diagnosed with a very sensitive condition. back in one thousand nine hundred four and we realize that we didn't want her to spend the rest of her life alone and we knew there had to be other families out there that were going through the same experience we were and some how families were managing to make it so we needed to know who we could talk to what kind of resources what the scientists were working on we wanted a cure we wanted to find other families to figure everything out how to live our lives and we said ok we're going to do a camp it'll be a different campus these kids can only go out and play at night but it'll be a camp to bring the families together and learn about how to live. i am. talking. here i am. your mom says you have lots of pictures you have pictures i dare. graduation let me show you. i'm going. to make you.

next p. is. just zero. zero draw my scheme in payment terms. the way x p. works is that there's a different subtypes of x p there's x p a x p b x p c all the way to x p g there's also an x p variant each one of those cases like a visa next p.c. means what type of dance i miss missing from their d.n.a. she's missing the x p c and sign from her d.n.a. it also indicates what level her body repairs where i might repair it in ninety eight percent rate if i get sunburned i heal quickly she repairs at a two percent rate she doesn't feel it becomes permanent damage and with x.p. kids that damage. becomes a dead dead skin matter dead cells matter of that then turns to cancers and fortune . sometimes these cancers can spread to the patients and the cancer.

when i was. when i was does. hard for me to understand why. my eyes. were able. to say. so in this picture she was for this was our first. and she was able to. hear the very mobile right. here she is. just a happy little kid. next to another camper or no she's lost her hearing has a lot of issues a lot of issues she struggles with. it's

the neurological. remember this is. kind. which. could happen. to. people. patients who. found in each patient in japan have

a form of severe neurological teach in relation. to the sun but then they have problems with walking and talking and hearing and eventually dying from an inability to swallow. food and. those that they can point to well and. we have done studies of we can do x. rays and. scans of the brains of the patients and the brains that are actually shrinking inside their heads the skull gets thicker in the brain spits. was a i think it's your right to live if you did the thing. i was. i was like thirty three wells. made fun of me because i had to have my son.

protective clothing you know i just imagine myself as a power the wiser looks like a power ranger the way i dress look like a party so i just saw that as a positive for you know have. all your reducing. if you step out in the sun you know. in school. and they're like shannon like where do you go during the summer and i'm like actually i go to place called camp sundown and they're like what's that i don't like oh it's a camp for people that can't go out in the sun and they're like so vampire camp you know like no no no like they're not vampires they just can't go on this. it's them but. i wasn't sure she yeah this is like

a safe house i guess they don't have to talk about what they go through with us because we understand and i think that's like the main point of camp is like we're here to keep you safe but at the same time. we understand what you're going through . so you don't have to tell us your story because we understand so just have fun. doing you know what's really going to say that things like the color of the car i didn't know that was. a member look it was the high ridges. that we were at the new york state museum with our campers and were here to see just the exhibits of new york state natural history animals of the past and future indian. records and things the museum normally closes at five every night

that we're able to be here tonight. because volunteers from the museum have come back late at night open the doors for us a lot of scrimmage down. the. line that is going to live there but. yeah. i live in queens new york. and i don't come every year but i started coming here when i was two years old so i basically grew up here i've been coming with my older brother chris but my older brother having experience just it's hard you know he doesn't really go outside during the day it's hard to like king out with people during the nighttime because either people have school or work so he you know he's either inside all the time or you know just pull for walks. so when he comes here

it's just he's able to do whatever he wants to do you know he has something to do he's occupied you know he has friends. some the next time. you know we didn't get this. book. to move. to this was. not a. good. i'm. done . breaking backward we're living you. know this is a picture of my brother nine when we were young on our first serious chance. at this i think the campfire used to be attached to him very clean and stuff. like. baby me my brother and everyone's like family here going up with each

other i mean a lot of people a family this event this petition is that says this it was. seven hundred the five and he does. so. i had. to live and he does august but. had our apartment. had my tights or. trying to think there's like one type of rock which is just an extra can go on there which is like a measure of different types of sized have walls that are fused together in. your boyfriend. understand they hear. his rise.

as if it. is. he was sad and so do i. now why do. i can't. have the oil. you took in a boat the person of your choice is it anything. like this going to see if somebody that has drugs. and. i'm going to. somebody that i have strength to go with it would have to be some of the that would be supportive under the surgeries the man who perhaps you know it was the you know . somebody like give me a positive mindset you know but person that it was

a tough one so when you have somebody who understand. going to the grocery store. so it's by outside. but for the purposes of the video you know my son dear this is what i would normally have to wear when i go outside when it's not sun. one of the places i lived i lived in city and i would get shot of that all the time. i think a lot of people in town recognize me by sight but they don't really know my name. it's kind of awkward to just like stop in and say hey i'm jason and this is why i wear this gear you know. i have been you know. by. the by police and stopped by police. stout by complete strangers you know people taking pictures of me and you know laughed

about it i'm not really sure why. i mean i know i look kind of weird but. those tend to confuse me i don't know if i saw someone walking down the street like that if i try to keep my distance. i don't know who this guy is why it's just like this just try to keep my distance but so for some reason people would like. you know keep your face about it and weigh. what politicians do to. put themselves on the line to get accepted or rejected. so when you want to be president. most women want to be rich. and to go on to be cross with you like that before three in the morning can't be good. i'm interested

always in the waters in the house. or should. when a loved one is murdered it's natural to seek the death penalty for the murder i would prefer it be to the death penalty just because i think that's the p.r. thing the right thing resurged. shows that for every nine executions one convict is found innocent the idea that we were executing innocent people was terrifying is just no really hasn't been that we hear even many of the times families want the death penalty to be abolished the reason we have to keep the death penalty here is because that's what murder victims' families want that's going to give them peace that's going to give them justice and we come in and say. not quite enough we've been through this this isn't the way.

condition i have is known as iraq throw poetic purple feria. acronym is p.p. . i was. four years old when i first remember having first attack from the sun and i was diagnosed when i was a weapon the pain is indescribable it's feels like a really really bad chemical burn but it goes through your skin in your muscle down to the bone and there's no relief painkillers don't work and the last for five days to a week pretty debilitating. and i was dating jason i mean it was definitely is a different experience because there's two things that night but i mean jason's

a person who. he thinks outside of the box really easily and so i never felt like i was missing anything i mean. just like a bad thing is just so he's so happy you know agent play victim to the world he didn't play like. the. couldn't do anything. you were no there's no cure. genetic disorder. we decided we would have children obviously because we have two of them and. actually neither one of them have a p.p. and we genetically tested them for that but if they did have the p.p. we would not have heard that either because we both know they can have a fulfilling life with the p.p. in all of jason's electrician he he's the provider of the family he works full time

right now i work as an in-house maintenance. for a manufacturing plant i work during the night shift and that way you know i don't have to be in the sun is something goes wrong outside the plant i can go up in the darkness and not have to worry about having and he computer tech on cloudy days i can still i can so get sick but it's like. so i got a sunny day i get like three minutes we're going. to cloudy day i was going anywhere from an hour to two or three hours. you know family time to train times people went to the weather for like what what's the weather going to like me want to take make me want to eat you know like

a strange thing to watch a movie is reversed you know as it's like. to go out and. play out in the rain paddles and we definitely had picnics in the rain when you can. get to see these kids. barry is going to. get me i did a track and the rain is the best it's rainy and the clouds are usually dark.

ok. normally windows are to use for light to bring light into the house and often they'll build it so that the most windows are in the direction of sunlight we didn't of course want the sunlight in our house but you know we don't want to let's say we live in the dark so we have these windows here the orange looking ones and that's an amber tint it's a film that they can put on the window that they typically use for medical technology remember where at camp sundown it's for people with x.p. most burner or you know. those people get harmed by ultraviolet light or u.v. . then my condition is p.p. and people with e.p. p.

are sensitive to blue light so when i'm in the sun outside i can't be in the sunlight because it's got that blue light but on the inside i can put my hand right up to the window and not have to worry about it because all the light to harm is because blocked. as you know light contains a rainbow of colors and it contains colors you can see. like a light these are different energies of light and so green has more energy than red blue has more energy green and has more energy than blue. we can see the light. but we can't and it has the highest energy and with. a range of energies as well who moved to this is blocked by the ozone layer but some of it gets through. my grandfather had a son our decent childhood we don't know what exactly he had. and

jake started having we are three actions his very first moment he was ten months old. and we couldn't really figure out what it is and by the time that he was about three years old. we started watching because of my grandfather's time. because we noticed it was seasonal so he would break out as soon as you know sort of spring started and it would and close to the beginning of winter and every year it kind of just got a little bit stronger and a little bit more intense and a little going to became a little more intense it was easier to pinpoint what it was all. we actually need this different types of. uva is the right to see. it's always there during the day. is what gives you heat the rays that you could feel from the sun so when you go out in this five hundred.

days you can feel the started beating on your skin right yet that's so when you go outside in the winter do you feel that heat beating on your skin when you're outside. there is. well we're going to set up. that night and. you have approved during the day. and see there's a crew well it's not very easy to see as a pro because it feels like everyone and then he discovered it's. you're like oh and you kind of appreciate it a bit more when you go. this is a window that's tinted with dark tan to block out the u.v. here is for me it's not be you fear is that there's

a whole different. diseases are affected by different wavelengths but this is this is deafening adequate for. tens on both sides of the pain. one of the things that we discuss is the use of a u.v. meter this is a u.v. meter and the way the t.v. meter works is that there is a photo electric cell here at the top of the meter and all you do is shine that photo electric cell at a light source for example the sunlight coming through this window. as you can see that u.v. meter is registering numbers and for many patients this. level of u.v. is too much and will be causing damage.

and if we step into the full sun we'll see that. registering in the thousands this amount of enough to cause significant amounts of damage to people with. for even a short amount of time being outside. no more like a few seconds. one two three four we . owe you. for. i experience a genetic disease in the united states and europe expiate is about one in a million in other parts of the world it's much more common for instance in japan it's one in twenty thousand and we did some studies that show most of the patients with x p plan have the same taishan of the same breaking the d.n.a.

and we call that a founder mutation and we were able to do studies of the d.n.a. and show that this founder really taishan the rows one hundred generations ago in japan which is approximately two thousand years ago so that pay attention has been around for the right here just are a perfect example. i started. america last year she thought she was. worse me or. she little by little she. she opened the door no you see a rodent talking plea because she knows she's not alone or with experience. whereas the church on fire company church down new york and the church health care

company that high for companies together i think and games for our kids so they lead them to do water games and they're dressed up in the firemen self it so they get to feel what it's like to be a fireman all the ows. and they suit against each other with water and then they're going to have some hot dogs and some s'mores and they're going to have back in place games ever. but. there is a lot of people out there would of. course are cases. or cities that they speak worse it is that it. is going to have a positive mindset you. know it's hard yes i've been the president will take speak

well a little because we want to be stuck in your house or your room in the summertime. and. i know that feeling and i know how a lot of people go through a way of. depression or anxiety because it's not there is not a good kids you have to have a good support system at home or somebody to talk to that's what camp is about you know we make you feel like part of the family and you just want to go home afterwards. they you want to stay forever. well you can hear that stocks. you know. the mind of

the. pain they. are. when a loved one is murder it's natural to seek the death penalty for the murder i would prefer and it mean when the death penalty just because i think that's the fair thing the right thing research shows that for every nine executions one convict is found innocent the idea that we were executing innocent people is terrifying news just no really hasn't been that we hear even many of the times families want the

death penalty to be abolished the reason we have to keep the death penalty here is because that's what murder victims' families what that's going to give them peace it's going to give them justice and we come in saying. not quite enough we've been through this this isn't the way. with the whole make this manufacture consent instead of public wealth. when the running clubs isn't protect themselves. when the financial merry go round lifts only the one percent. to ignore middle of the room six. million more you leave. the world. is finding

this out a need. your mother has been authorized to have the power but i can gouge and downs which i live. yeah as the starter how did you. know going to f.l. is going to go with a bridge. problem which i just thought of thirty of us had the most a month ago c.d.m.a. look to figure out that the open door has a funny person as you tell. and this is going to. treat their entire national market know that these industries. ignore money. and the mother of. this.

with a temporary freeze in the bruising. there was global concern as russia and ukraine.