which is wrong if there's an issue raise it you're watching out international join me in half an hour for the latest. what is the next step for the saga known as breaks and also is a stage being said to finally end the syrian conflict and why is m i six scrambling to stop trump. why.

you. know so for reasons. not to sure. but to discover our strengths. to the way the weaker because through all of. which that's where i got a black ribbon. symbolizes no matter the strew out go through these have the strength to push through you no matter what i'm. going to have. power and the positivity to just. go about my day everybody. so i just got out of the mindset because you have a negative like if you have a negative mindset. you think everything bothers you are you going to be the first

. 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. zero. zero draw my scheme. 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. kids that damage. becomes dead dead skin matter. sometimes these cancers can spread to the patients and the cancer. when i was growing up when i was desert. it was 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 no she's lost her hearing has a lot of ice a issues a lot of uneven issues she struggles with. increases her weight her trouble walking. back aches is it to explain. it's the neurological aspect. remember this is a. pathway so all you have to say just kind. of the type which. would be.

in some way 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 and eventual. we have some studies of we can do x. rays. scans of the brains of the patients and their brains that are actually

shrinking inside their heads the scole gets thicker in the brain spit small. was a life that your mother made 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. the way i dress look like a party so i just saw that as a positive. you know have. all your review soon 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

a place called camp sundown and their leg that i don't like oh it's a can 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. 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 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 horrific. 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. 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 they just pull 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 hour right here. you know we really didn't get this. like. to move back. 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 of camps. at this i think the camp fire i used to be attached to him very clean and stuff. like. baby me my brother every once the family here going up with each other i mean a lot of people a family this event this tissue is that says this it was. seven. of the five and. i had. one of them does august but. i'm kind of bird. had my tights are. trying to think there's like one type of rock which is this that actually can go on there which is like

a mixture of different types and sized paddles other fused together. you send your boyfriend. understand they hear. his rise. and then it was. who was. you know why you do what you do. i can't. tell you you could. have a girl. you took in a boat the person will be a choice is it any. wow we're just going to see if somebody that has

drive. and. i'm going to. somebody's going to 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 give me a positive mindset you know but first and then it was a tough one 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 the city i would get shot of 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. and then you know. by. by police and stopped by police. 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 why.

what is the next step for the saga known as briggs and also is a stage being set to finally end the syrian conflict and why it's m i six scrambling to stop trump. condition i have is known as 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 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 about him is 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. . unli genetically tested them for that but if they did have the 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 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 if something goes wrong outside the plant i can 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 anywhere from an

hour to two or three hours. you know family time frame times people look to 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 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. harry is going to vote.

for me i did a track and the rain is the best so it's rainy 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 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. and jake started how being we are three actions his very first time and 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 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 light 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 well we're going to set up outdoor games so they go outside at night and all these games a lot when the you have proved to be 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 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. this is deafening adequate for. me double tense 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 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.v. is 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. theory for any

. oh you. well i. experience a genetic disease in the united states and 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 taishan of the same predicament. 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 right here in this part perfect example. i started. a matter that year she was. worse me or.

she was little by little she. she opened the door now you see her right in the open talking plea because she knows she's not alone we're going to be. here. we're at the church on fire company church down new york and that 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 it isn't easy you just gotta 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 a way of. depression are exactly 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. that he want to stay forever he never. really he was that fox. you know he has. denied me. saying they. are.

i'm this young the lying circumstances that allowed for these emergence of this very very eventful 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 army for occasions. 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 and seven countries in five years americans pay for the wars with their money others with their lives if we were willing to go into harm's way and

willing to risk being killed for a war and surely we can risk some discomfort or uneasiness for. god. the commander of the seas the korean navy vessel says that he did liberally order russia's orders not to enter its waters in the cad strait during a clash the border russia and ukraine close to conflict. incident led to emergency sessions of the un security council where russia was once again accused of being an aggressor. this will never get through she's not going to get a majority we have no idea where this is heading and he's launched a scathing attack on treason.