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 year on our way your mom says you have lots of pictures you have pictures i dare. graduation. i'm going. to make you. pics he is.

dermatologist zero. zero zero draw my scheme in payment terms. 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 bends 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. kids that damage. becomes a dead dead skin matter dead cells matter of them turns to cancers unfortunately sometimes these cancers can spread to kill the patients. i mean.

for the first time. when i was growing up well i was does. hard for me to understand why. my setlist. we're able. to say. so and this picture she was for this was our first. and she was able to see and hear the 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 my safety issues a lot of uneven issues she struggles with. weight trouble walking. back aches is it to explain.

it's the neurological aspects to. remember this is. just kind of. which. would be. in some way that 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

adventure we. can. we have. we can do x. ray. 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 my. sister. was a life it's your own life to live. even if. i was. i was like a thirty three wells. and made fun of me because i had to have my son. protective clothing. and just imagine myself as a pound ukraine wiser looking like

a power ranger the way i dress look like a party so i just saw that as opposed to. you know i have. no need for you and me to sing oh. if you step out in the sun know you know. in school time they like shannon like where do you go during the summer and i'm like actually i go to place called camp sundown and there leg that i don't like oh it's a camp for people that can 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. 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 it on its own going to say that things like the headquarters of parties 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 town. that one single digit 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 tart 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 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. and the next time around you. you know we didn't get this. like. to move. 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 chance. at this i think the campfire to be attached to him very clean and stuff. baby me. 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 the five and. so. i had. one of them you just saw the best but. i'm kind of number have. had my tights are. trying to think there's like one type of rock which is just that actually can go on there which is like a measure of different types and sized have walls that are fused together. you send your boyfriend. understand they hear. his rhymes. as a joke and then it was as. who was. you

know why you do what you do. i can't. tell you you can. have a girl. if you look into both the person of your choice is it anything. wow i was just going to see if someone of that had a drink. and. i'm going to. 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 give 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. 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 my son. 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. i have been you know. by. the by police and stopped by police. stout by complete strangers you know people have taken pictures of me and. 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. you know. i'm one of them but i think. we're buddies.

with them to i don't want. as many as. you know that you're not yeah kind. cool he could feel that he had a ticket as you claim he made the most of all the love here when a couple why don't you. join me every thursday on the alex salmond show and i'll be speaking to guest of the world of politics sports business i'm showbusiness i'll see that. when a loved one is murder it's natural to seek the death penalty for the murder i would prefer it be in the death penalty just because i think that's the fair thing the

right thing research shows that for every nine executions one convict is found innocent the idea that we more executing innocent people is terrifying the is just no really hasn't been that we're even many of the times families want the death penalty to be abolished the reason we have to keep the death penalty here is because that's what murder victim's families what that's going to give them peace that'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. condition i 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 a really really bad chemical burn but it goes through your skin in your muscle all the way 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 i 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 have to worry about having a and you can pee. back on cloudy days i can still

a concert get sick but it's like. so i got a sunny day i get like three minutes we're going. to cloudy day i was going anywhere from an hour to two or three hours. you know family time this is brain time you know some people went to the weather for like what what's the weather can be 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 it's right. to go out and. play out in the rain titles and we definitely had picnics in there raymond you can . get to see the scary. stuff. barry is going.

to do. i did a track and the rain is the best it's rainy and the clouds are usually dark. and. ok. normally when those are to use for light to bring light into the house and often they'll build it so that in the most windows or in the direction. no sunlight we didn't of course want the

sunlight and 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. mostly for her 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 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 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 was and by the time that he was about three years old. we started watching because of my grandfather's time 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 right. 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 the 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 set up the outdoor game so they go outside at night and. you. see. well it's not very easy to see because it feels like everyone discovered. and you kind of appreciated a bit more when you got really. 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's a photo electric cell here at the top of the meter and all you do is shine out photoelectric cell at a light source for example the sunlight coming through. as you can see the 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 sun you'll see that. registering in the thousand this amount of u.v. is enough to cause significant amount of damage to people with x.p. for even a short amount of time being outside in this amount is. no more

like a few seconds. one two 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 patient of the same great community. and we call that a fountain mutation and we were able to do studies of the d.n.a. and show that this founder retained one hundred generations ago in japan which is approximately two thousand years ago so that it has been around for the. year this are a perfect example. i started to. order. a

matter of last year she thought she was. worse me or. she little by little. she opened the door now you see her right to talk. plain because she knows that she's not alone the world experience. whereas the church on fire company churchtown new york and the 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 firemen self and 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. or cities that they speak worse it isn't easy these guys have a positive mindset you can. you know it's hard yes i've been the president told 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 if. depression or anxiety because

there's no 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. they you want to stay forever. well you can hear that fox. yeah. you might be. saying they.

are. i've been saying the numbers mean something they matter the us of the with one trillion dollars in debt more than ten white collar crimes happen each day. eighty five percent of global wealth you loans to the ultra rich eight point six percent market saw a 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 ai industrial park but don't let the numbers overwhelm. the only numbers you need to remember is one one business show you can afford to miss the one and only boom bust.

us 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 circulated branches off that says we're going to attack and destroy the government and seven countries in five years americans pay for the walls with them money those with dad 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. imax kaiser one more of my guide to financial survival this is a hedge fund is a device used by professional scallywags to earn money. that's right these has

flaws are simply not accountable and we're just adding more and more to them. totally destabilize the. global economy you need to protect yourself and get informed because we're. so what we've got to do is identify the threats that we have it's crazy. let it be an arms race. theory dramatic development only really exists i don't see how that strategy will be successful very critical. to sit down and talk. subscribe to roughly. twelve euros fifty plus.