our daughter katie was first diagnosed with a very rare sun 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 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. on the. next day was. your mom says you have lots of pictures you have pictures i am. graduations let me show you.

i'm going. to meet you. thanks p. . dermatologist zero zero. zero zero zero zero draw my scheme. to the way x p. works is that there's eight 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 is 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. fits that damage. becomes a dead dead skin matter dead. unfortunately sometimes

these cancers can spread to the patients and the cancer. when i was growing up well i was dealt with. it was hard for me to understand why. well it looks good. 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 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. it's the neurological aspects to. remember this is a. pathway. which is basically a large. that would be repaired. 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 been found in japan have a form of severe. hearing adventure we. can. we have. we can do x. rays. scans of the brains of the patients and the brains that are actually shrinking inside their heads the scole gets thicker in the for instance. over. here a lot of that you know my goodness. you git that. i was. i was like in there you can well believe. you 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 opposed to just sort of you know have. all your review soon oh. if you step out in the sun 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 side. 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 i say i'm going to say that things like the chorus of course i didn't know that was. a member look it was originally. 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 that. 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 i can go 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 cool 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 here. you know we really didn't get this. like. to move. to the gulf. i'm. done. right back where we were living you. know this is 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. like. baby me my brother everyone's like family here going up with each

other i mean a lot of people a family that's the same memphis tisha is that says this it was sound. and. so. i had. to live and he does august but. we've had our apartment. i'm kind of burned 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 measure of different types and sized have walls that are fused together. is so your boyfriend. understand they hear. his rise.

and then it was as. who was. you know why do i can't. you know. 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's going to have strength to go with me would have to be some of the you know would be supportive under the surgeries the might of the biopsy that was the you know. somebody like give me

a positive mindset you know but first and then it was a tough one so someone when you had 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 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. by police and police. by complete strangers you know people taking

pictures of me and. i'm not really sure why. i mean i know i look kind of weird but. those kind of 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 to keep my distance but for some reason people would like. you know keep your face about it and why. i'm this young going circumstances. allowed for these emotions of this. video and.

i think that we may get the songs and even grandsons of some point in the future it's primarily a political issue that has taken on minutes where he went on the traditions. you know. i'm one of them but i think. you know one thing when there's a real body. you should have been there so. i don't want that or i can't just let me ask. you know that you know yeah.

he could feel that he had a ticking dad when i made the move a little bit more that you know one of the before i had a. 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 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 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. agent 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 fill in life with the p.p. you know what 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 any 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 would do the weather for 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 i was reversed you know i was 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 the skid. harry is going to. get me i get a. rag and the rain is the best it's rainy the clouds are usually darkness.

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 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 e.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 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. but we can't and it has the highest energy and within. a range of energies as well moved to this is blocked by the ozone layer but

some of it gets through. my grandfather had us on our g. since childhood we don't know what exactly he had. and jake started how being weird reactions his very first time he was ten months. 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 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 when it was all. different types of. the like you see. it's 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 you have a proof of being during the day yes i guess. there's a proof 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 tend to block out the u.v. . for me it's not the u.v. rays it's the visible light so you have different. diseases are affected by different wavelengths of light but this is. this is deafening adequate for. me double tense on both sides the pain time 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 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 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. three four we . know you. well i. experience a genetic disease in the united states and in 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 the same breaking with 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 pay attention has been around for the. year just are a perfect example. i started to. order. a matter that year she thought she was. worse me or. she little by little. she. she opened the door you know you see her right in the. plane because she knows that she's not alone the world with its feet.

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 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 with. worse or cases as you know or cities that may speak

worse it is it. is got to 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 is. depression or anxiety because it's not there is not a good kids' years after that of 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. be mad at me. saying they. are. what is the next step for the saga known as breaks it also is a stage being said to finally end the syrian conflict and why is m i six scrambling to stop trump.

manufacture consent instead of public wealth. when the roman clauses protect themselves. with the famous. lifts only the one percent. to ignore middle of the room six. million real new. 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 of officers were got to act and destroy their

governments and seven countries in five years americans pay for the wars with them money others with their lives 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 or uneasiness for us. when a loved one is murder it's natural to seek the death penalty for the murder i would prefer it be in the death penalty just because i think that's the fair thing the right thing. surge shows that for every nine executions one convict is found innocent the idea that we were executing innocent people was terrifying those just know it hasn't been that we're even many victims' 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 to that's going to give them peace it's going to give them justice and we come in and say. not quite enough we've been through this this isn't their way. subscribe to roughly boston get all roughly content for just twelve euros fifty per month. russia claims ukraine is playing the anti russia card to boost its image that says the kremlin is once again accused of aggression during two emergency sessions of the un security council following sunday's clash and say. the united states will can.