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 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 am. graduation. dermatologist zero. zero zero. people. 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 katie's next p.c. means what type of enzyme this 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 rate if i get sunburned i heal quickly she repairs at a two percent rate she doesn't feel it becomes permanent damage with x.p. kids that damage. becomes dead dead skin matter dead cells matter turns to cancers and fortunately sometimes these cancers can spread to the patients and the cancers are beginning much earlier. there's an average of. ten years. for the first. well as. well i was does it. hard for me to understand why.

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 he or she is it or just a happy little kid. next to another camper or know she's lost her hearing has a lot of ice age issues a lot of uneven issues she struggles with. increases her weight her trouble walking causes her pain in her. back aches. it's the neurological aspects to. remember this is a. pathway so all you have to say.

which is basically a large. would be repaid. in some way that could happen in your brain but having nothing to do. damage with. what the. people. most of the patients who have found in japan have a form of severe. hearing and eventual.

we have done studies of we can do x. or. 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. i live a life that you're the only one doing this. you did this or that. 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 euchre. the way i dress looked like a party so i just saw that as a positive. you know have. all your review soon oh you know. 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 a 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 i'm. that is 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 it's 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 it's

a lunatic that things like the headquarters of parties i didn't. it was. a member look at. 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. 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 well you know he's either inside all the time or you know just pull for locks so when he comes here just he's able to do whatever he wants to do you know just he has something to do he's occupied you know he has friends. in the next hour right here. you know we didn't get this stuff. like a. little bit. of this drug.

that. i'm. right back where we were living. as a picture of my brother nine when we were young on our first serious camp. 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 families this event this petition is that says this it was. seven. of the five and. i had. one of them does august but. had our

apartment because 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 mixture of different types and sized have walls that are fused together. you sent your boyfriend. understand they here. his rise. as if it. is. who was. now why. do. i can't.

have a girl. if you look into both the person of your choice is there anything. wow i want this to see if someone that has strengths and. i get is. somebody that i have strength to go work with have to be some of the that would be supportive under the surgeries the man in the biopsy that was the you know. somebody like me a positive mindset you know but person that it was a tough one so someone 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

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 just like stop in and say hey i'm jason and this is why i wear this gear you know. you know. by. police and stopped by police. stopped 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 confused 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 for some reason people like. you know

keep your face about it and why. responding in this out of need. not authorized by you can get out your guns which i live. yeah. i'm going to. bring your father the most almost the whole cd i mean look if you could be the one has it funny because it was you know you. write down the bank for the work on the base walker chemical lights and this is going to that he would develop a new treatment there internationally known that these industries out of polluting

the. simply ignore the money the mother the mother even though. the mother doesn't like means we lost even this. it's ukraine versus russia again a minor maritime incident on the current strait is said to be anything between a major international crisis to achieve campaign trick as ukraine's interest in election cycle take your pick but one thing is for sure russia is deemed aggressive by the west even when defending its sovereignty. when a loved one is murder it's natural to seek the death penalty for the murder i would prefer and it means to win the death penalty just because i think that's

a 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 was terrifying lose just know really hasn't been that we're 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 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 era throw poetic purple feria. acronym is p.p.

. i was. four years old when i first remember having a first attack 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 most 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 you know he didn't play victim to the world he

didn't play like. that he couldn't do anything. you were. 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. you know in 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 you know go up in the darkness and not have to worry about having any p.p.

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 anywhere from an hour to two or three hours. you know family time to train times you know some people like to the weather or like what what's the weather going to like you want to take make me want to eat you know like a strange thing to watch a movie or is reversed you know why is this 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. harry is going to. get me i get a. rag 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. light. 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 harm is because blocked. as you know light contains

a rainbow of colors and it contains colors that you can see. like a light these are different energies of light and so green has more energy then red blue has more energy green has more energy 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're very action it's 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 when it became a little more intense it was easier to pinpoint what it was all. we actually need. 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 the summer. and you can feel the sun 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. see there's a well it's not very easy to see because it feels like everyone discovered. and you kind of appreciate it a bit more when you go. this is a window that's dark. diseases are affected by. this is. one of the things that we discuss is the use of a u.v. meter this is a u.v.

meter and the meter works is that there is a photo electric cell here at the top of the meter and all you do is shine out photoelectric cell at a light source for example the sunlight coming through this window. as you can see that. numbers and. this. is too much. and if we step into. this amount of enough to cause significant amounts of damage to people with.

for even a short amount of time being outside in this amounted to. no more like a few seconds. one two three four any . how do you. or. i experience a genetic disease in the united states in europe and experience 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 predicament 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 one hundred generations ago in japan which is approximately two thousand years ago so that taishan has been around for the. year just part perfect example. i started.

a matter that year she thought she was. worse me or. she little by little she. she opened the door no you see her right in the open talking plea 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 the 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 have back in

place games of. the like. but. there is a lot of people out there with. worse or cases. or cities that they speak worse or is it easy. to have a positive mindset you can. you know it's hard yes i've been depressed before thanks pete 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 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. can. you find me. saying they.

u.s. veterans who come back from war often tell the same stories. were going after the people who were killing civilians they were not interested in the wellbeing of their own soldiers either they're already several generations of them so i just got this memo from the circular defense office says we're going to attack and destroy the government in seven countries in five years americans pay for the wars with them money on those with dives if we were willing to go into harm's way and willing to risk being killed for a war surely we can risk some discomfort for an easy

for. ourselves the banks prepared to lead the credit market collapse are they going to do for now with the recent rate rises there's room now for q e four they would come in and they would revert reverse q quantitative tightening and the engineer and other bond market rally. tony you know. i'm one of them but i think. we're buddies.

i don't want. to know that you're not a yeah. and tries to. keep its feet and to keep. going i say he made a move to follow the man that he come from. it is revealed that three ukrainian ships which russia says illegally entered its territorial waters had weapons and ammunition on board however the international community has been quick to back and.