so i just got to. like if you have. been going to be. what we. are a daughter katie was first diagnosed with a very 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 will and 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. told. it was ok your mom said you have lots of pictures you have pictures i hear. graduation for your album. i'm going. to meet you. next p. . dermatologist zero. zero draw my scheme in payment terms for me. so that's. the way x p. works is that there's a different subtypes of x p there's x p. x p b x b c all the way to x p g there's

also an x p variant each one of those cases like a this next piece means what type of answer i miss missing from their d.n.a. she's missing the x p c and something from her d.n.a. it also indicates what level her body was. where i might repair it in ninety eight percent if i get sunburned i heal quickly she repairs at a two percent rate she doesn't feel it becomes permanent damage. damage. becomes dead dead skin matter. fortunately sometimes these cancers can spread to the patients and the cancer is a big. first . well as. well i was dealt with. it was hard for me to understand. as. well.

we're able. to say. so and 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 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 or trouble walking. back aches is it to explain. it's the neurological aspects to. remember this is a. pathway. which

. would be repaid. in some way. but having nothing to do with. what the. people. most of the patients who have. in japan have a form of severe. hearing adventure. and from. what. we have. we can do extra.

scans of the brains of the patients and the brains that are actually shrinking inside their heads the scole gets thicker in the brain spits me. over. here it was you who. did this. who did this if. i was. i was like thirty three wells. made fun of me because my son. protective clothing you know i just imagine myself as a pound you chris the wiser. the way i dress look like a party so i just saw that as a positive for you know. all you're going to soon oh. well. if you

step out in the sun you know 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 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 island. 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's it going to say that things like the core of the party i

didn't know that was. another look at what the how rigid. we were at the new york state museum with our campers and we're 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 let us commit down. that one single digit 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 i can go 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. in the next hour right. you know we really didn't get this. like. to move. to the gulf. i'm.

done. right back where we are 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 camp fire i used to be attached to him very clean and stuff. like. baby me my brother everyone's like family here going up to to each other i mean a lot of people a family this is a memphis tisha is that says this it was. seven. of the mind and. so. i had. to live and he does odd doesn't. move. because number have.

had my tights are. trying to think there's like one type of rock which is just that actually can go on there which is like a mixture of different types and sized pavel's other things to go there. you send your boyfriend. understand they here. his rise. and anyone. who was. you know why you do what you do. i can't. tell you you can. have a girl. if

you look into both the person of your choice is there anything. wow i want this to see if someone of that has strengths and. i'm going to. somebody that i have the strength to go work with 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 when you have somebody who understands. 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 the 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. that i've 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 twenty 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 is just like this just try to keep my distance but so for some reason people like. you know keep

your face about it and why. you know world of big part of. law and conspiracy it's time to wake up to dig deeper to hit the stories that made history media refuses to tell more than ever we need to be smarter we need to stop slamming the door on the back and shouting past each other it's time for critical thinking it's time to fight for the middle for the truth the time is now we're watching closely watching the hawks. i've been saying the numbers mean something they matter the u.s. has over one trillion dollars in debt more than ten point. time stamping each day.

eighty five percent of global wealth you want to be ultra rich with six percent market saw thirty percent rise last year some with four hundred to five hundred three per second per second and one rose to twenty thousand dollars. china's building two point one billion dollars. but don't let the numbers overwhelm. the only numbers you need to remember in one one business show you know for a minute the one and only. condition they have is known as iraq throw poetic purple feria. acronym is e.p. p. . i was. four years old when i first remember having

first attack from the sun and i was diagnosed when i was alone and the pain is indescribable it's feels like a 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 one 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 a bad thing is just so he's so happy you know he 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 a p.p. we were not a very good at it either because we both know they can have a fulfilling life with the p.p. 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 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 anywhere from an hour to two or three hours. you know family time frame times people look to the weather for like what let's see whether you like me want to take make me want to eat you know like a strange thing to watch a movie or 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 many can. get to see the skin. there is

girl. 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 our house and often they'll build it so that the most windows are in the direction of sunlight we didn't want the sunlight in our house

but you know we don't want to let sally 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 three. 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 i have to worry about it because all the light to ours 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. but we can't and it has the highest energy and within. 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 how being weird reaction with his very first time he was ten months. 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 seasonal so he would break out as soon as you know sort of spring

started and it would 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 when it became a little more intense it was easier to pinpoint what it was all. different types of. the light you see. always there during the daytime. 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 screen.

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 truck you have proven to be in during the day yes. well it's not very easy to see is a privilege because it feels like everyone can go outside and then you discover this and it's 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 of light that this is this is deafening adequate for. double tents on both sides the pain turning through. one of the things that we discuss is the use of a u.v. meter this is a u.v.

meter and the way that 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 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 x.p. patients this. level of u.v. is too much and will be causing damage. and if we step into the full sun you'll see that light meter is now registering in the thousands it's this amount of u.b.s. enough to cause significant amounts of damage to people with x.p. for even a short amount of time being outside and this amounted to. no more

like a few seconds. one two three four we . know you. well i. experience a genetic disease in the united states and in europe expat 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. man have the same tension of the same breaking with d.n.a. and we call that a fountain mutation and we were able to do studies of the d.n.a. and show that this founder retained one hundred generations ago in japan which is approximately two thousand years ago so that i pay attention has been around for the right here just are a perfect example. i started. a

matter that year she was. worse me or. she little by little she. she opened the door now you see her right to talk. because she knows that she's not alone the world with its be. here. whereas the church on fire company church down new york and the church fire company that's 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 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 head back in place games ever.

but. there is a lot of people out there were. worse or cases. or cities that they speak worse it isn't easy you just gotta have a positive mindset you can. you know it's hard yes i've been depressed the full day 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 what if. 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 fox. can. you find me. saying they.

are. so what we've got to do is identify the threats that we have it's crazy own foundation let it be an arms race is often spearing dramatic development only closely and going to exist i don't see how that strategy will be successful very critical time to sit down and talk. with all make its manufacture come sentenced to public wealth. when the

running closest to protect themselves. with the financial merry go round be the one percent. we can all middle of the room signals. the real news is. on this young the lying circumstances that load for these emergency of this very very long term violence i think that we may get the sons and even grandsons of guys at some point in the future it's primarily a political issue in iraq that has taken on the military. and our matriculation. to live well today.

three days straight. then knowing that my nose. and visiting with the president should really stop. this hour's top stories on our international ukraine's president has called on his country's parliament to consider declaring martial law in response to russia detaining three ukrainian naval ships on sunday just off the coast of crimea. the deal we have a great day. for the u.k. u.k. prime minister to resign from the e.u. seal of approval for divorce though she now faces a tough.