through all of. which. i got a black ribbon to. symbolize a lot of go through. the strength to push through you no matter what i do i'm going to have. power and the positivity to just. go about my day everybody. so i just got to. make it like if you have emerging markets i. think you're doing bothers you are you going to be. what we. are

a daughter katie was first diagnosed with a very rare son 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 will and go out and play at night that will be a camp to bring the families together and learn about how to live. oh she was. walking home. it was great your mom said she had lots of pictures and then you have pictures i am. congratulations.

he is. zero. zero draw. 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 eighty six p.c. means what type of enzyme is missing from their d.n.a. she's missing the x p c and so on from her d.n.a. it also indicates what level her body. 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. that damage. becomes a dead dead skin matter dead cell matter. 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 and hear in a very mobile right if i 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. it's the neurological aspects to. remember this is. kind. of the type which is basically a large lesion. 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 found in japan have a form of severe. hearing . from him. through. we have done studies 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. i live a life that's your right to live if you think that. i was. i was like thirty three wells. and made fun of me because i had to have my son.

protective clothing you know i just imagine myself as a pound euchre the wiser looking like a power ranger the way i just look like a party so i just so that i suppose. you know i have. come to call you and me to sing oh you call me. if you step out in the sun 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 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 a sign. that it's them but. if you see yeah. 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 hardly i didn't know that was. a member look what i 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 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 taking 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 up 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. on 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. 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. like. baby me my brother every once the family here going up with each

other i mean a lot of people a family this in memphis tisha is that says this it was sound. seven. of the five and. i had. one of them does august but. i doubt. i'm climbing a berm have. had my tights are. trying to think there's like one type of rock which is just an extra. 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.

and then it was as. who was. you know why do. i can't. have a girl i. can invoke the person of your choice is it anything. like this going to see if someone who has had a drink. and. i'm going to. somebody is going to have strength to go with it would 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 give

me a positive mindset you know but first and then it was a tough one so. you're 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 of that all the time. i think a lot of people in town recognize me might say 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. have 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 no 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 is just like this to try to keep my distance but suffer some reason people like. you know keep your face about it understand why. join me every thursday on the alex salmond show and i'll be speaking to guest of the world of politics sport business i'm show business i'll see that. on the line circumstances. allowed for the emergence of this very very gentle

violence i think we may get the sons and even grandsons of dies at some point in the future it's primarily a political issue in iraq that has taken on minutes. and on the traditions. condition they 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 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 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 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 as 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 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 me 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 then the most windows are in the direction of sunlight and 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 not 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 and has more energy than blue. we can see the ultraviolet light. but we cannot and it has the highest energy and with. a range of energies as well. to this is blocked by the ozone layer but

some of it gets through. my grandfather had a son our g. since childhood we don't know what exactly he heard. and jake started having we are three actions his very first moment 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 started. 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 samadhi. you can feel the started beating on your skin right yet that's u.v.b. 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 set up outdoor games so they go outside at night and. during the day. well it's not very easy to see is a pro because it feels like everyone and then he discovered this and it's. like oh and you kind of appreciate it a bit more when you go. this is.

dark. diseases. 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 way the t.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 the u.v. meter is registering numbers and for many acts patients this. level of u.v.

is too much and will be causing damage. and if we step into the full size you'll see that light meter is now registering in the thousand 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 in this amount if. 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 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 tension of the same break in the 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 retain one hundred generations ago in japan which is approximately two thousand years ago so that taishan has been around for a. year just are a perfect example. i started out like. a matter of last 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 empire 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 race be worse it isn't easy these guys have a positive mindset you can. you know it's hard yes i've been the president full 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 is. 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 don't want to go home afterwards. that he want to stay forever he never.

really had him and that sucks. you know he. needed to me. say next. what politicians do something. they put themselves on the line they get accepted or rejected. so when you want to be president or injury. or somehow want to.

have to go right to be close this is what the full story of the morning can't be good that i'm interested always in the waters of. the city. in a world of big partisan group a lot and conspiracy it's time to wake up to dig deeper to hit the stories that made stream media refuses to tell more than ever we need to be smarter we need to stop slamming the door. 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 for watching closely watching the hawks.

i'm one of them but i think. they will one when there's a real body. a blot on. one of them one obviously banister. put them down i don't want that i guess i mean yes i knew she needed that looking at it yeah. it's kinda any kind of sick. when i say you need to move i want to feel the love young enough but also before i don't.

know i really want to say. three days. a week then you know sat in meetings in the. middle of the commitments to. the. ukraine declares martial law in response to russia detaining three of its navy ships off the coast of crimea on sunday russia says the presence of the vessels in its waters was a provocation. the deal we have agreed today i'm not surprised future for the u.k. . british prime minister i'm against the e.u. seal of approval for how bright.