yes. but we. are a daughter katie was first diagnosed with a very sensitive condition. back in one thousand nine hundred four and we realized 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 somehow 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. there was. your mom says you have lots of pictures you have pictures i their. graduation. pics he is. just zero. zero draw scheme. so that's. 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 disconnect. p.c.

means what type of this missing from their d.n.a. she's missing the x p c from her d.n.a. it also indicates what level her body. where i might repair it in ninety eight percent if i get sunburned i heal quickly she repairs a two percent she does it becomes permanent damage. damage. becomes dead dead skin matter. sometimes these cancers can spread to the patient's cancer. when i was growing up when i was desert. it was hard for me to understand why. well it looks good and then. to say.

so in this picture she was for this was our first. and she was able to see him here in a very mobile right of way just like any other kid here she is it or just a happy little kid. next to another camper or no she's lost her hearing has a lot of ice a issues a lot of uneven issues she struggles with. weight trouble walking. back aches is it to explain. it's the neurological aspect to. remember this is a. pathway. which . would be repaired.

in some way that could happen. but having nothing to do with. what the. people. most of the patients who have found in japan have a form of severe. hearing and eventual. we have. to x. ray. scans of the brains of the patients and their brains that are actually

shrinking inside their heads the scole gets thicker and the brain spits. over. here a i think it's your right to live if you did this if. i was. i was like thirty three wells. and made fun of me because my son. protective clothing you know i just imagine myself as a pound you create the wiser look like a power ranger the way i dress look like a party so i just saw that as a puzzle. you know i have. all your new suit oh. well. if you step out in the sun you know you know. in school time 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 their leg was 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 and i'm like no no no like they're not vampires they just can't go on this. that it's them but. if you see. 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 to say i'm going to say that things like the chorus of course i didn't know that was. a member look it was

horrific. 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 one single digit that. i live in queens new york. 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 full for walks so when he comes here 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. he. gives them the next time right. you know we really didn't get this. like. to move back. to the gulf. i'm. done. right

back where we're living you. know this is a picture of my brother nine when we were young on our first serious of camps. at this i think the camp fire i used to be attached to him very clean and stuff. baby me. every once the 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. of the five and. i had. one of them does august but. we've had our. number have. had my tights are. 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 and sized have walls that are fused together. is so your boyfriend. understand they hear. his rise. as if it. is. who was. you know why you do what you do. i can't. tell you you don't. have the oil.

you've spoken to both the person of your choice is there anything. wow i want this 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 money the biopsy that was the you know. somebody like me a positive mindset you know but person that it was a tough one so so when you have somebody who would 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 i would get shot 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 just like stop in and say hey i'm jason and this is why i wear this gear you know. i have been. followed by. 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 like 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 why.

don't all trump firing doubts of a meeting with vladimir putin doesn't seem like a big deal given the already polls states of affairs between the two countries of the manner in which it was canceled over twitter may sting the kremlin more than the consolation itself is the mythical trump truth in a bromance finally over. finding this out the need. for authorized by you can get out your guns which i like. yes this stuff. you know going to impose. going to go to the bridge. but unless i go over and over the other side the most i'm not the hosea i

mean look to get the job and you know has a funny but it was a million. four hundred ten days right on the bank call for the work on the bayswater of chemical eyes and this is going to that he would develop a new treatment internationally mockers know that these industries out of polluting your dissenting ignored your money that type and mother. and they need some other long lightnings we all stay in this. place. i've been saying the numbers mean something they matter the u.s. is over twenty trillion dollars in debt more than ten white collar crimes happen each day. eighty five percent of global wealth he longs to the ultra rich eight

point six percent market saw a thirty percent rise last year some with four hundred to five hundred trade per second per second and bitcoin rose to twenty thousand dollars. china is building a two point one billion dollar a i industrial park but don't let the numbers overwhelm. the only number you need to remember is one one business shows you can't afford to miss the one and only. condition i have is known as era throw poetic purple feria. acronym is. i was. four years old when i first remember having a first attack from the sun and i was diagnosed when i was

a weapon the pain is indescribable it's feels like really really bad chemical burn but it goes through your skin in your muscle all the way 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. peeping south side of the box really easily and so i never felt like i was missing anything i mean. just like i mean it's just so he's so happy in l a didn't play victim to the world he didn't play like. that he 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 a very good at it either because we both know they can have a fulfilling life with the p.p. you know and jason's an 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 you know go up in the darkness and not have to worry about having and he could be attack 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. from an hour to two or three hours. you know family time frame times when people went to the weather for like what what's the weather going to be like you want to take make me want to eat you know like a strange thing to watch a movie is reversed you know why is this like. to go out and. play out in the rain paddles and we definitely had a big mix in the rain when you can. get to see these kids. barry is

going to vote for obama vote. and. i do. the rain is the it's rainy the clouds are usually dark. and. i mean ok. normally when those 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 mostly burner or you know. those people get harmed by ultraviolet light or u.v. . then my condition is e.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 i have to worry about it because all the light arms because blocked is you know light contains a rainbow of colors and it contains colors that you can't see like ultraviolet light these are different energies of light and so green has more energy than

red blue has more energy than green and ultraviolet has more energy than blue. we can see the ultraviolet light bumblebee. but we can't. arrange your energies as well. to this is blocked by the ozone layer 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 reactions his very first summer when he was ten months old. and we couldn't really figure out what it was 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 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 just got a little bit stronger and a little bit more intense and a little when it became a little more intense it was easier to pinpoint what it was all. different types of. the light you see. it's always there during the day time. is what gives you heat the rays that you feel from the sun so when you go out in the summer. you can feel the sun beating on your skin right. so when you go outside in the winter do you feel that heat beating on your skin when you're outside. on the skin or. what are you doing go over where you're going what we're going to set up for

outdoor games so they go outside at night and all these games a lot when the you have a proof of being during the day. well it's not very easy to see as a privilege because it feels like everyone can go outside and then you discover this and 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 it's the visible light so you have different . diseases are affected by different wavelengths but this is this is deafening adequate for. tens on both sides pain time and through. one of the things that we discuss is the use of a u.v. meter this is a u.v. meter and plays with the u.v. meter works is that there is a photo electric cell here at the top of the meter and all you do is shine out

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 u.v. is enough to cause significant amounts of damage to people with x.p. for even a short amount of time being outside. no more like a few seconds. one two three four we

. know you. well 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 patient of the same great community. and we call that a fountain 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 right perfect example. i started. america last year 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 a speech. whereas the church on fire company church down new york and the church health care company that i first fell face together i think and games for our kids so they led them to do water games and they're dressed up in the fireman's outfit 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 with. worse or cases. or cities that they speak worse or is it easy. these guys have a positive mindset you can. you know it's hard yes i've been the president will take speak well a little because nobody wants to be stuck in your house or your roof 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 good years after that 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 fox. you know has. denied me. saying they.

are. we miss out a need. in our eyes how the. rich . bring us. the most a month and if we get good and you know has a funny. and right on the bank call for the work on the base walker can make a light and this is going to that he would develop a new treatment international market know that these industries out of polluting

simply ignored your money and mother. and mother the things we lost even this. and the week's top stories the g. twenty. with a truce in the u.s. china. and a shorter than expected conversation between presidents. and ukraine off to russia seizes three ships off the coast of crimea.