i got a black ribbon 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 emerging 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. oh he was. coming home. it was ok your mom says you have lots of pictures you have pictures i am. graduations let me show you you're all right i'm going to am always.

dermatologist 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 a v is next 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 the two percent way she does it becomes permanent damage. that damage. becomes dead dead skin matter dead cells matter of cancers and fortunately sometimes these cancers

can spread to the patients and the cancers are beginning much. less than ten years. for the first skin cancer when i was growing. when i was done with. it was hard for me to understand why. well it would say. that. 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 of way just like any other kid he or 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 by worry of. her weight her trouble

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

a form of severe. hearing and a venture. in. the food. we have. we can do extra. scans of the brains of the patients and their brains that are actually shrinking inside their heads this cold gets thicker in the brain spits. i live a life that you're right oh my goodness. you did it that. i was. i was like in thirty three wells. made fun of me because i had to have my son.

protective clothing you know and just imagine myself as a pound ukraine. just looking like a party so i just saw that as opposed to. you know have. all your review soon oh you know. if you step out in the sun know you know. in school time they're like shannen like where do you go during the summer and i'm like actually i go to camp sundown and their leg was 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 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 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 it's a lot of lunacy that things like the headquarters of parties i didn't. it was. a member look at. the how rigid. 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. 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 i can't go 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 we 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 didn't get this stuff. like a. move. to build a. good. i'm. yeah. right back where we were living. was 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. 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. and. i had. to live and he does august but. i'm kind of for 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 mixture of different types and sized paddles either fused together. your boyfriend. understand the here.

and then as. who was. now why. do. you. have the floor. if you look into both the person of your choice is it any. wow i want this going to see if someone of that has strengths and. i'm going to. somebody that i have strength to go with we 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 me a positive mindset you know but person that it was top one so 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 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 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. that then 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 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. when a loved one is murder it's natural to seek the death penalty for the murder i would prefer and it means to live 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 were executing innocent people is terrifying the is

just no really hasn't been that we hear even many of the dems 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 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. 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 show business i'll see that. what politicians do something to. put themselves on the line to get accepted or rejected. so when you want to be president or injury. or something i want to be honest i. have to go right to the press that's what i'm up for three in the morning

can't be good. i'm interested always in the waters in the house last. question. 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 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 to train times you know some people like to the weather or like what what's the weather going to be like you 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 man you can . get to see the skin. it's. very it's got a bit of both. 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 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 was 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 g.'s since childhood we don't know what exactly he. 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 going to 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 this. case 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 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 discovered. 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 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 thousands it's 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. theory for any . 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. pretty 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 really taishan rose one hundred generations ago in japan which is approximately two thousand years ago so that taishan has been around for the right here 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 talking plea 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 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 have back in place games of on. the right. order. but. there is a lot of people out there were. worse or cases. or cities that may speak worse it

isn't easy. these guys have a positive mindset you can. you know it's hard 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 kid that 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. can't. deny them the. pain they. 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 ventured off that says we're going to attack and destroy the government and seven countries in five years americans pay for the wars 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 or an easy for us. join me every first week on the alex salmond and i'll be speaking to us of the world of politics or business i'm show business i'll see if. so.

after crossing the russian border i had visual contact with the russian border service vessels and i consciously ignored their commands to stop i was aware of the action of the ukrainian vessels and because straits provoker to moscow accuses kiev of masterminding the confrontation in the coach strait where ukrainian ships were fired upon and detained by russia which says they illegally entered its territorial waters. yet another reckless russian escalation.