i was. you. know so for a reason you see this. not to sure we seize but to just over our strengths. the way to be with you because through all of my mom was a witch that's why i got a black ribbon to. symbolize this no matter the strong go out go through these have the strength to push through you no matter what i want to i'm going to have. power and the positivity to just. go about my day everybody. so i just got a positive mindset because if you have a negative like if you have

a negative mindset and. you think you're doing bothers you are you going to be pressed. you want to. what we've seen yet. 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. graduation. thanks p. dermatologist zero zero zero. zero zero draw my scheme. to 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 bands i miss 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 cells matter of that and turns to cancer so we need. unfortunately sometimes these cancers can spread to the patients and the cancer is a big. one i was. well i was does that. 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. hear the very mobile right. here she is it just a happy little kid. next to another camper or no she's lost her hearing has a lot of issues a lot of uneven issues she struggles with. weight. back aches. it's the neurological. remember this is. kind. which. would be.

in some way. having nothing to do with. what. people. patients who have that found in japan have a form of severe neurological teach in relation. to the sun but they have problems with walking and talking and hearing and eventually they dying from inability to swallow. food. thinking. well. we have some studies of the we can do x.

rays. scans of the brains of the patients and the brains that are actually shrinking inside their heads the skull gets thicker in the brain spits. over. a i think it's your right arm to let. you do the thing. i was. i was like very very well. made fun of me because i had to have my son. protective clothing you know i just imagine myself as a pound you create the wires are looking like a power ranger we are just looking at a party so i just saw that as opposed. to not have. all your review soon oh. 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 camp sundown and they're like what's 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 like no no no like they're not vampires they just can't go and this. is them that's. wasn't sure she 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 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 it's really going to say that things like the headquarters of parties i didn't know that was. a member not going

to have the high ridges. that they were at the new york state museum with our campers and were 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 and be. ready. to hand in singing just a little bit 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 of the tar to liking it out with people during the night time because either people have school or work so well you know he's either inside all the time or you know just full of fun. watts so when he comes here it's just he's able to do whatever he wants to do you know he has something to he's occupied you know he has friends. some extra rate is. you know we didn't get this. like. to move back. to the. good. i'm. done.

right back where we were living. as 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. 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 petition is that says this it was. seven hundred miles and cache so. i had. to live and he does odd doesn't. move. because of burn have. 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 have walls that are fused together. you sent your boyfriend. understand they here. his rise. and then it was as. he was sad and so do i. now why do. i can't. have a girl. if

you look into both the person of your choice is it anything. like this going to see if someone that has strengths and. i get is. somebody that i have strength to go with it would have to be some of the that would be supportive under the surgeries the might of 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 understand. going to the grocery store. saw this guy 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 my son. 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 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. i 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 and that 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.

join me everything on the alex salmond show and i'll be speaking to us of the world of politics school this unless i'm show business i'll see that. 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's office that says we're going to attack and destroy the government and seven countries in five years americans pay for the wars with them money on those with lives. if we were willing to go into harm's way and willing to risk being killed for

a war then surely we can risk some discomfort or easiness for. condition i have is known as iraq throw poetic proper 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 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 are certain 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 agent 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 would 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 is something goes wrong outside the plant i can 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 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 stream stay home and watch a movie or is reversed you know why is this like. to go out and. play out in the rain models and we definitely had picnics in the rain many can. get to see the skin. barry is going to. do me i did say. 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 i have to worry about it because all the light to harm me is 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 than red blue has more energy green and has more energy than blue. we can see the light. but we can't and it has the highest energy and with. a range of energies as well moved 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 had. 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 is and by the time that he was about three years old. we started watching because of my grandfather sign our teeth 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. you can

feel the sun 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. on the screen. we're going to. 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. for me it's not as visible. 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 delay 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 that. registering numbers and. this. and will be causing damage.

and if we step into the. ring in the. enough to cause significant amount of damage to people with. for even a short amount of time being outside and this amounted to. no more like a few seconds. one two three four three . how do you. or. i experience a genetic disease in the united states and in europe 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 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 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 now 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 i first fell face 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 with. worse or cases as you know or cities that may speak worse it is that if you. have a positive mindset you can. you know it's hard yes i've been the president pulled

back speak well a little because we want to be stuck in your house or you're. 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. be mad at

me. saying they. on this young the lying circumstances that allowed for the emergence of this very very long form violence i think that we may get the songs and even grandsons of guys at some point in the future it's primarily a political issue in iraq that has taken on minutes where you put on the for occasions.

or i came. into that. room being dead and. gone i made a move. because

. people. just twelve euros fifty months. we have a great day. for the u.k. . that is the best deal. forces detained three.