well we. our 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.

on the. next day was. your mom says you have lots of pictures you have pictures i their. graduation let me show you. i'm going. to make you. next p. . 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 a v. is next p.c. means what type of answer 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 repair 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 a dead dead skin matter dead cells matter of that and turns to cancers. unfortunately sometimes these cancers can spread to the patients and the cancer is a beginning. for the first . one i was. when i was does. hard for me to understand why. my eyes. were able to go and i had. to say. so in this picture she was four this was our first. and she was able to. hear

the very mobile right. here she is that for just a happy little kid. next to another cancer or no she's lost her hearing has a lot of my safety issues a lot of uneven issues she struggles with. weight. back aches. it's the neurological aspect. remember this is. just kind. of the type which. would be. in some way. having nothing to do with.

what. people. patients who have been found in each patient in japan have a form of severe neurological teachin racially sensitive to the sun but they have problems with walking and talking and hearing and eventually they dying from an inability to swallow. food and. those that think you know well what. we have done 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 skull gets thicker in the brain spits my. sister.

over. here a i think it's your right arm to live the fugitive that. i was. i was like very very well. made fun of me because 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 a problem for you know. all your reducing 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 a place called camp sundown and they're leg 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 on this. that it's 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 going to say that things would look the headquarters of parties i didn't know that was. a member you're going to have the high ridges.

that 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 we need. a. new man and signature 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 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 just hold on. watts so when he comes here is 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. he. gives some the next time. you know we didn't get this. book. to move. to the. good. i'm. done. right back where we are living you. know there's a picture of my brother nine when we were young on our first series of camp. at

this i think the campfire used to be attached to him like 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. of the five and. i had. one of them who does odd doesn't. move. because number 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 paddles outer fused together.

you send your boyfriend. understand they hear. his rise. and then it was. he was sad and so do i. know why you do what you do. i can't. tell you you don't. have the oil. you took in a boat the personal view choice is if anything. like this going to see if somebody that has drive. and. i'm going to.

somebody that i have strength to go work with have to be some of the that would be supportive under the surgeries the money 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 would understand freak i can't go 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 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 to 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 i'm not 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 would like. you know keep your face about it and why.

you know world a big part of the law 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 smart or we need to stop slamming the door on the back 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 we're watching closely watching the hawks. u.s. veterans who come back from war until lists. same stories. were going after the people who were killing civilians they were not interested in the wellbeing of their own soldiers either there already several generations of them so i just got this memo from the circulating branches off 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 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 an easy for us. so what we've got to do is identify the threats that we have it's crazy. let it be an arms race is often very dramatic development the only place really i'm going to resist i don't see how that strategy will be successful very critical time to sit down and talk. conditionally have is known as iraq throw poetic perper feria. the acronym is e.p.

p. . i was. four years old when i first remember having first attack from the sun and those days notice 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 muscles 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. it is a different experience because there are things that night but i mean jason's a person who. thinks outside of the box really easily and so i never felt like i was missing anything i mean. just like i

think 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 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 and he 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 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. barry is going. to do. 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 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. most burner or you know. 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 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 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 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 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'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 this 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 five hundred. days 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. there is.

well we're going to set up outdoor games that night and all these games you have to prove to be during the day. and see there's a crew well it's not very easy to see as a pro because it feels like everyone and then you discover this and it's. you're like oh and you kind of appreciate it a bit more when you go. this is a window that's tinted with dark tan to block out the u.v. here is for me it's not be you fear is that there's a different. diseases are affected by different wavelengths but this is this is deafening adequate for. tens 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 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 u.v. meter is registering numbers and for many patients this. level of u.v. is too much and will be causing damage. and if we step into the full size we'll see that. registering in the thousands 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 two three four we . owe you. for. 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 predicament. 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 rose one hundred generations ago in japan which is approximately two thousand years ago so that pay attention has been around

for the right here just right perfect example. i started. a matter of last year she thought she was. worse me or. she little by little she. she opened the door no you see a rodent talking plea because she knows she's not alone of the world experience . whereas a church on fire company church down new york and the church camp 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 firemen south but 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 were. worse or cases. or suggest that race be worse it is that it. is going to have a positive mindset you can. you know it's hard yes i've been the president will take 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. depression are exactly because it's not there is not a good good years after 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 it sucks. you know has. denied me. saying they.

are. 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 secretary to branches off he says we're got to act and destroy the government and seven countries in five years americans pay for the walls 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 then surely we can risk some discomfort for an easy miss

for. i've been saying the numbers mean something they matter to us with over one trillion dollars in debt more than ten white collar crimes happy day. eighty five percent of global wealth you want to be rich eight point six percent market saw thirty percent flies last year some with four hundred to five hundred three per second per second and that one rose to twenty thousand dollars. china is building a two point one billion dollar ai industrial park but don't let the numbers overwhelm. the only numbers you need to remember is one one business showed you know ford to miss the one and only.

son of the. but. what were the words. let. the commander of one of the ukrainian ships detained in the strait claims he deliberately ignored russia's the orders to stop three ukrainian ships would find apartments seized by russia which they say illegally entered into territorial waters and. yet another reckless russian escalation.