to. go through. 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 to. have a negative like if you have a major markets that. bothers you are you going to be. what we. are a daughter katie was first diagnosed with a very rare sun 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 will and go out and play at night but it'll be a camp to bring the families together and learn about how to live. if he was. coming home. it was ok your mom says you have lots of pictures you have pictures i am. graduations make sure you're all right there and will and always nice to meet you. thanks for the. dermatologist zero.

zero zero. the way x p. works is that there's a different subtypes of x 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 this next p.c. means what type of enzyme this missing from their d.n.a. she's missing the x. p.c. from her d.n.a. it also indicates what level her body. where i might repair it in ninety eight percent if i get sunburned i heal quickly she repairs at a two percent rate she does it becomes permanent damage. damage. becomes dead dead skin matter dead cell matter. and fortunately sometimes these cancers can spread to the patients and the cancers are beginning.

when i was growing up when i was does it was. hard for me to understand why. as. well. 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. here she is that for 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. her weight trouble

walking. back aches is it to explain. it's the neurological aspects to. remember this is a. pathway. which . would be repaired. in some way could happen. but having nothing to do with. what the. people. most of the patients who have found in japan have a form of severe. hearing

a venture we. can. we have. we can do x. or. scans of the brains of the patients and their brains that are actually shrinking inside their heads the scole gets thicker in the brain spits. over. here a i think it's your right to do this. you did this or that. i was. i was lying there you know wells. made fun of me because of my son. protective clothing you know i just imagine myself as

a pound you crystallize or look like a power ranger the way i dress look like a party so i just saw that as a positive for you know. all you're going to sing oh. 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 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 and i'm like no no no like they're not vampires they just can't go on this. 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 it want to say i'm going to say that things like the color of the car i didn't know that was. a member look it was horrific. that we 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 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 well you know he's either inside all the time or you know 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. on the next hour right. you know we have to get this. book. to move. to this very. good. 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. baby me my brother every once the family here going up with each other i mean a lot of people

a family the city of memphis tisha is that says this it was. seven. and. i had. to live and who does august but. i'm kind of 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 other fused together. you send your boyfriend. understand they hear. his rise. and then it was. who was.

you know why. do. i can't. tell you you can. have a girl. you can invoke the person of your choice. wow we're just going to see if someone who has 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 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. 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 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. have been you know. by. the by police and stopped by police. stopped 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 it. when i'm 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 summaries of people that i. know your face about it and why. i've been saying the numbers mean something they matter to us of that with one trillion dollars in debt more than ten white collar crimes have to each dish. eighty five percent of global wealth if you want to be ultra rich eight point six percent market saw thirty percent rise last year some with four hundred to five

hundred three per second per second and bitcoin rose to twenty thousand dollars. china is building a two point one billion dollar a i industrial park but don't let the numbers overwhelm. the only number you need to remember is one one business show you can afford to miss the one and only. 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 a certain branches off that says we're going to act and destroy the government and seven countries in five years americans pay for the wars with them money on those 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 for an easy miss for. condition i have is known as iraq 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 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 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 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'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. 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'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. than 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 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 within. 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 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. different types. so 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 this five hundred. days

you can feel the sun beating on your skin right yet that's 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. 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. and you kind of appreciate it a bit more. diseases

. 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 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 x.p. 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.v. is 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 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. from chippenham have the same tension of the same break in the 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 aren't 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 no you see her right in the open top. because she knows that she's not a lot of the world it's be. here. 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 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 would of. course are cases. where cities that may speak were sick is that he is going to have a positive mindset you can lead. you know his heart yes i've been depressed the

full facts 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 if. 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 if 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. deny them

the. pain they. are. ourselves the banks prepared to lead the credit market collapse or are they going to do q.e. for now with the recent rate rises there is room for q e four they would come in and they would revert reverse q t r a quantitative tightening and the engineer and

other bomb are corralled. when a loved one is murder it's natural to seek the death penalty for the murderer i would prefer it me with the death penalty just because i think that's the fair think the right thing research shows that for every nine executions one convict is found innocent the idea that we were executing innocent people was terrifying lose just mooned the present and 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 what 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 the way.

it was tough enough in. the. court hearings are held in russia for ukrainian navy personnel detained after sunday's clash in the carriage strange. european. companies define u.s. sanctions on iran the french oil giant. pulls out of the largest gas project in the country.