Disney World does something special for kids with XP. They open the park all night so these kids get to experience Disney World without having to wear all that gear, or the risk of injury from the sun. I thought that was so cool!
Wow! That’s really amazing. Regardless of the reason they are open, it’s wonderful for these kids to have some normality and get to enjoy something fun with their gear off. So strange that it only affected the girls! What a kind family ❤😢
These are the most healthy XP kids I've ever seen. Good on the parents on being proactive in adjusting their schedule and activties and getting the answers.
They are making things much worse than what it really is. I have this problem and as long as you have a baseball hat on with sunglasses and you keep a long sleeve shirt and keep your hands covered then your fine
A girl I tan track with had this disorder, and she didn’t use a whole set like these girls, just lots of sunscreen and longer sleeves. Idk if it’s different levels, but ppl should be able to live fairly normal lives.
Come to the UK! Sun hates us. In all seriousness, this condition must be an absolute pain to deal with! They are obviously doing an amazing job with how happy the kids are
I think albinos would get sunburn faster, but their skin recovers and heals itself. For XP patients, their skin doesnt repair itself properly so the consequences are much bigger.
Even in a climate with more clouds you are not safe. I’ve gotten a nasty cloud burn in San Francisco while walking the Golden Gate Bridge. I don’t have XP so I can’t imagine what would happen to someone with it.
@@ashleyplace7395 I have lived in places like Seattle, and other places with a dry hot desert climate and it’s like night and day. No comparison there. The family would benefit moving to a northern climate. Hands down, would absolutely be safer for their children.
Special gear would be better, but she could wear regular long sleeved shirts and a hat to block most of the rays. Walking in around in the sunset with nothing more than a sleeve less summerdress and flipflops is not exactly what i would consider 'taking extra precaution'. I am afraid that in her case, its more a matter of lack of knowledge and understanding.
@@ChallieWallie no, that's a cop out. XP diagnosis at 3 they would of been told what not to do. She knows what not to do as I can bet her doctors ha e told her time and again. Brazil isn't some 3rd world hell hole.
feel like moving to a place where the uv index typically stays at whatever level is safe would be the best thing to do, obviously if financially capable
As someone in Sydney, Australia.. their lives would be even harder than it looks in this video. We’re in the middle of our winter at the moment and it’s still so sunny, my house turns into an oven in the daytime (30+ degrees C) even if the temperature outside isn’t warm. Living here and having to avoid UV would be unimaginable.
The world is full of uv light. It doesn’t matter whether they live in Australia or the arctic. Even the type of lighting in their house can damage their cells. Moving wouldn’t solve anything.
Why? Southern Hemisphere has less daylight than the Northern Hemisphere. It's not how "sunny" it is. It's a matter of how much "daylight" there is, and the Southern Hemisphere gets several days' worth LESS than the Northern Hemisphere.
There was a true-life movie done in the late 70's or early 80's about a family with 2 girls that had this condition. I wish I could remember the name of the movie. It was well done and you could feel for the family and what they had to go through.
Almost word for word what u was going to say; ahout there having been a true-life movie about a family w the two girls sick w XP and an older brother from an earlier marriage if I'm not mistaken. The girls would have ballet or dance party/performance in their backyard after it was dark for their neighbors. I think for thst that family, XP was still a new medical diagnosis and not yet recognized, and if memory serves me well, their ped at first thought that they had left their children out in the sun too long as one girl was very young and blister-burned from the sun.
My skin is very sensitive to the sun and it causes pain. These brave souls help me cope with it! I wear color changing shirts and glasses to alert me when the sun is on me.
the kids from the first video, they were unlucky to have this condition, but so lucky to have that lovely family. they made me cry. they love each other so much and they are so happy. I wish every kid could have a family like that. the world would be such a better place.
I recall a story of a family with likely the same diagnosis who were looking to move to the town with the least sunlight all year round. They chose Prince Rupert, BC which locals know is the cloudiest place we can think of.
My mother-in-law around the foundation in the united states called the HED foundation, which then turned into the Sarah Moody foundation. She created a suit for children who were born without sweat glands through the help of NASA she then went on to develop a suit for children who are allergic to the sun as she traveled all over the world, presenting these suits to different children. Sadly, she passed away many years ago, and we were unable to keep the foundation going, as it was a nonprofit, Sarah had Sarah was an incredibly special person her fight to make sure these children were taken care of was nonstop. I think about the children today that grew out of their suits. It makes me sad to think that possibly they cannot go out in the sun anymore or have the dangers of overheating, because the cool Suit no longer fits them
I know how they feel that can be a little bit sad because they can do a lot in the morning and mostly they do some at sundown but they look so happy and have a loving and sweet family
Having XP in Brasil would be CRAZY with the level of sun exposure they have out there also it's so sad they didn't know what it was early enough for her to have help in time to avoid the amount of damage she sustained on her skin.
Reminded me of that horror film in which Nicole Kidman has a child who is allergic to sunlight, the climax was unexpected ! Loved that film (forgot its name)
Her parents possibly didnt know what was wrong with her or couldn't afford medical treatment before the damage was done. Google images shows how bad this condition can get in warmer more impoverished climates.
@@theopulentone1650 yes, but she being an adult doesn't thing that taking pictures outdoor was dangerous? her boyfriend didn't thing about that either... It was surprising
@@leticiabincoletto8166 seriously! She's walking around in a sun dress. Maybe she should have used some of the money she got to buy some of the headgear and that that the others were wearing.
@@theopulentone1650 the video says she was diagnosed at 2 years old. Either her case is exceptionally severe/comorbid with other syndromes (depending on the mutation she might be hypersensitive to other environmental triggers like certain chemicals), or she's had a lifetime of negligent care.
I had sensitive skin and I was allergic to the sun and anytime I go out in the sun my face would be red and rashes was all over my body and I would look like a balloon and would have to take a oatmeal bath and use different soap now when I get in hot heat or the sun I would get sick throw up get light headed and weak I’m sorry you have to go through this sis you girls is strong 💗.
If I had children who had this, I would probably move to a country with the lowest uv levels like Iceland? So that they can live as free as possible always. My heart goes out to them all ❤
How scary for the parents and children .More likely to get different cancers not just skin .Bless them 🙏😔❤️Love there love for life. I pray they have long healthy Lifes.These are the stories that I enjoy on this channel .Lizzie rocks can't for get her
I don't understand why the last girl's is so bad. It's like she didn't get the treatment necessary and had severally damaged her skin. The four prior people looked fine.
@@rachaelcameron1542No. They just didn't care to follow the advice. XP diagnosis at 3, they would of been told what to do. They and now her, refuse to do it.
I feel most for the last woman, but i wonder why she isn't wearing the protective hat that the rest of them had and also why she isn't covering up her skin when outside. I would be protecting what little I had left.
Could someone tell me a good Uva/Uvb handheld reader like they have and where to get it? I don't have the same type of condition but I do have a skin allergy to UV light and struggle with it daily. Especially because my condition was discovered after we moved to Florida.
Dear Lord, please find a closer cure for XP, give them better gear, protect them from cancers and make sure to surround them with loving support and understanding for others looking in and for the families. Amen❤
There will never be a cure or even hard research I to XP be a use it is rare and there is no money in it. Why would they cure things and cut off their customer base?
i have cold urticaria..... do i do understand the condition in a different way....i am allergic to the cold...... the world seems enjoy a temperature of 70-75° while i am freezing at those temperatures.... it makes life hard, but i can't even imagine what it is like to be allergic to the sun, water, ect. like others have to deal with.....i hope everyone with the rare conditions have a great life despite the hardships.....please keep striving :)
If I had a condition where I couldn’t be exposed to sunlight I would probably stay inside all day. And I usually stay inside anyway for reasons like the heat and preferring indoor actives like video games. Why do these conditions where you have to avoid the sunlight never seem to affect those that don’t like going out anyway? It’s not a condition anybody would want of course but I am just saying they probably wouldn’t be as bothered by it.
+barcroftmedia *_Xeroderma pigmentosum_** is no joke. Melanoma is the tip o' the proverbial iceberg.* Adverse neurology is all too common in this recessive-genetic syndrome.
I love how happy their brother was about them taking off their gear on the beach at sunset. This condition affected the whole family.
I just came here to type this exact thing!!!
It was very sweet. ❤
I was about to say the same 🥺 so cute ❤
Not gonna lie it made me cry.
@@Onnlenaww❤😢
Disney World does something special for kids with XP. They open the park all night so these kids get to experience Disney World without having to wear all that gear, or the risk of injury from the sun. I thought that was so cool!
I always assume they open night and day.
@@RoseNZiegmost of the time I know Floridas park closes at 10pm
Thanks for info
Wow! That’s really amazing. Regardless of the reason they are open, it’s wonderful for these kids to have some normality and get to enjoy something fun with their gear off. So strange that it only affected the girls! What a kind family ❤😢
That's different than this..@matt5539
These are the most healthy XP kids I've ever seen. Good on the parents on being proactive in adjusting their schedule and activties and getting the answers.
I feel so sorry for anyone having to deal with this. You are all warriors!!
True ey.
They are making things much worse than what it really is. I have this problem and as long as you have a baseball hat on with sunglasses and you keep a long sleeve shirt and keep your hands covered then your fine
A girl I tan track with had this disorder, and she didn’t use a whole set like these girls, just lots of sunscreen and longer sleeves. Idk if it’s different levels, but ppl should be able to live fairly normal lives.
You're beautiful. I like white women and blue eyes. But I can't speak English, I use my Google translate people
INDONESIA
💘💘😊💕😁😊❤❤
You know they exaggerated this for the video right?? 😂😂
Come to the UK! Sun hates us. In all seriousness, this condition must be an absolute pain to deal with! They are obviously doing an amazing job with how happy the kids are
It is. I have it. I sleep during the day now
I'm albino and I think these sweet gals possibly burn worse then me. Never thought I'd see the day. Bless them
Thryss, you are absolutely beautiful!
You're beautiful. I like white women and blue eyes. But I can't speak English, I use my Google translate people
INDONESIA
💘💘💘💘😂😅😂☺☺😍
I think albinos would get sunburn faster, but their skin recovers and heals itself.
For XP patients, their skin doesnt repair itself properly so the consequences are much bigger.
@@imanrusmana-gp9zfalbino doesn’t mean white. It means lack of pigment. U can be black and albino lmao and they also don’t have blue eyes either
@@bellarose8630
They more often then not have blue eyes. It's uncommon to see Albinism in humans without blue eyes
Moving somewhere with more of a cloudy climate would give the entire family a better quality of life and wouldn’t have to worry about cancers as much
I second that.
@@khonkhosilelihle7414 living in Australia of all places too, one of the hottest climates on the planet, must be torturous for those children.
Yes great idea
Even in a climate with more clouds you are not safe. I’ve gotten a nasty cloud burn in San Francisco while walking the Golden Gate Bridge. I don’t have XP so I can’t imagine what would happen to someone with it.
@@ashleyplace7395 I have lived in places like Seattle, and other places with a dry hot desert climate and it’s like night and day. No comparison there. The family would benefit moving to a northern climate. Hands down, would absolutely be safer for their children.
It's sad to think that if the last lady had the creams and special gear and monitor like the other families her health probably wouldn't be as bad
I was thinking the same thing. The first 4 look completely fine.
Special gear would be better, but she could wear regular long sleeved shirts and a hat to block most of the rays.
Walking in around in the sunset with nothing more than a sleeve less summerdress and flipflops is not exactly what i would consider 'taking extra precaution'.
I am afraid that in her case, its more a matter of lack of knowledge and understanding.
@@ChallieWallie , she said she also uses sunscreen for the exposed parts of her body. It's very hot in Brasil, unlike the other countries shown.
@@caroldannenberg9778 but sunblock only reduces part of certain rays. In her case, it won't help at all.
@@ChallieWallie no, that's a cop out. XP diagnosis at 3 they would of been told what not to do. She knows what not to do as I can bet her doctors ha e told her time and again. Brazil isn't some 3rd world hell hole.
feel like moving to a place where the uv index typically stays at whatever level is safe would be the best thing to do, obviously if financially capable
that is not possible. they get burned with any uv index that is slightly above 0.
As someone in Sydney, Australia.. their lives would be even harder than it looks in this video. We’re in the middle of our winter at the moment and it’s still so sunny, my house turns into an oven in the daytime (30+ degrees C) even if the temperature outside isn’t warm. Living here and having to avoid UV would be unimaginable.
With that skin cancer risk I'd be trying my best to get out of Australia.
True
If that was an option they would've moved already.
Is the country too hot?
@@xirisx1988 Maybe it is but there are factors that make them not to be able to move.
@@khonkhosilelihle7414 yes, especially in summer
I blister in any light due to my autoimmune diseases. I can’t imagine going through it as a kid, bless their hearts!
Australia would be the last place I’d raise kids with this diagnosis. Of course many can’t move suddenly, but they really should make it a priority.
Agreed!
The world is full of uv light. It doesn’t matter whether they live in Australia or the arctic. Even the type of lighting in their house can damage their cells. Moving wouldn’t solve anything.
UV light is everywhere. It also penetrates clouds. Doesn’t really matter where they live.
Why? Southern Hemisphere has less daylight than the Northern Hemisphere. It's not how "sunny" it is. It's a matter of how much "daylight" there is, and the Southern Hemisphere gets several days' worth LESS than the Northern Hemisphere.
Australia is one of the best countries in the world in terms of healthcare and opportunities and they’ve made a lot of changes to adapt
There is a family with the same condition who moved to Prince Rupert BC Canada because it is the area that has the least sun exposure.
😅
There was a true-life movie done in the late 70's or early 80's about a family with 2 girls that had this condition. I wish I could remember the name of the movie. It was well done and you could feel for the family and what they had to go through.
Children of the dark.
Almost word for word what u was going to say; ahout there having been a true-life movie about a family w the two girls sick w XP and an older brother from an earlier marriage if I'm not mistaken.
The girls would have ballet or dance party/performance in their backyard after it was dark for their neighbors.
I think for thst that family, XP was still a new medical diagnosis and not yet recognized, and if memory serves me well, their ped at first thought that they had left their children out in the sun too long as one girl was very young and blister-burned from the sun.
For people with XP, they look really good! They barely have any moles! (apart from the woman from brazil)
Because of their parents quick intervention with the protective gear/precautions. Unfortunately, seem like the Brazilian woman didn't have this.
@@apara2005Exactly!
im so sorry, they are adorable children.
We are allergic to sunlight. Camerman: let's go outside and take a picture for the thumbnail
Lol you're funny.
"Sometimes my genius is, it's almost frightening."
My skin is very sensitive to the sun and it causes pain. These brave souls help me cope with it! I wear color changing shirts and glasses to alert me when the sun is on me.
Bless them girls. I wish one day there would be science to help them go out into the sun without burning x
as for the last lady, why does she not take more precautions? When they showed her outside at the end with bare arms I was confused.
Can't believe that no one has mentioned the UV hats or meters before she started developing tumors that cost her body parts.
She said she uses sunscreen.
@@caroldannenberg9778 Yea the others wouldn't wear so much of special UV protective gear if sunscreen was all that it takes to be safe.
@@caroldannenberg9778 sunscreen is not enough. it only blocks a few of the uv. u need clothes and only go out after 4 pm.
It made me mad. I would never go in the sun like that. That’s why she looks so bad
the last person seems ill advised to go out for walks in the sun like that. just go for a moonlit walk eh?
That last woman needs some better UV protective gear.
Wait so the last woman goes outside anyway? Without covering?
Imagine wow. No wonder she looks like that.
Ja now u understand why she looks like that
Being in one of the sunniest countries too, they are very happy children
👵Back when I was in high school, there was a girl who was allergic to the sun. She had to wear a GAP fleece hoodie and gloves all summer! 🥵
So sad😔
And they live in australia as well :( that’s tough
I live in Australia and I couldn’t imagine not being able to go into the sun. I would consider living somewhere less sunny 24/7 like the UK.
Your kids are beautiful and kind, wishing the best to your family.
So sorry for them, beautiful little girls, i hope they find a cure ❤️
Me too ey.
Northern Europe or northern US might be quite pleasant for them
the kids from the first video, they were unlucky to have this condition, but so lucky to have that lovely family. they made me cry. they love each other so much and they are so happy. I wish every kid could have a family like that. the world would be such a better place.
Salute to this parents who protect and love their children 🤚🏻🤚🏻💕
Beautiful family. So much strength and positivity
I recall a story of a family with likely the same diagnosis who were looking to move to the town with the least sunlight all year round. They chose Prince Rupert, BC which locals know is the cloudiest place we can think of.
Wondering why the last woman didn’t cover her self in the sun.
She said she uses sunscreen.
My mother-in-law around the foundation in the united states called the HED foundation, which then turned into the Sarah Moody foundation. She created a suit for children who were born without sweat glands through the help of NASA she then went on to develop a suit for children who are allergic to the sun as she traveled all over the world, presenting these suits to different children. Sadly, she passed away many years ago, and we were unable to keep the foundation going, as it was a nonprofit, Sarah had Sarah was an incredibly special person her fight to make sure these children were taken care of was nonstop. I think about the children today that grew out of their suits. It makes me sad to think that possibly they cannot go out in the sun anymore or have the dangers of overheating, because the cool Suit no longer fits them
I know how they feel that can be a little bit sad because they can do a lot in the morning and mostly they do some at sundown but they look so happy and have a loving and sweet family
Never come to Alaska in the summer! We get 20hrs of sun a day, some places the sun never sets.
The third one is quite disturbing. Hope she gets help.
❤They should move to Forks, WA.❤
A reminder to not take anything for granted. Even what we’d define as the little things.
I'd love to know what sunblock they use for their girls. I'm albino and after the U.S changed the way they do sunblock I burn through it now
Try get from Asia they got good ones
I've heard of the condition and watched movie where the main character has it as well. It called Midnight Sun
They should consider moving to Norway or Sweden. Living in Australia with this skin condition is not smart.
Or, Russia, Alaska, Canada...
@@AJBlueJay who would want to move to Russia or Alaska?
Maybe you could help finance a move like that for them?
@@pegs1659 They can start a Go-Fund-Me page. Maybe you can do it for them.
@@ultrasonicradiation whats wrong with alaska?
Incredible family and so strong and strength and amazing and unbelievable positive and love there confidence and course and encouragement ❤
Should come to Sweden, no sunlight here lmao
Having XP in Brasil would be CRAZY with the level of sun exposure they have out there also it's so sad they didn't know what it was early enough for her to have help in time to avoid the amount of damage she sustained on her skin.
If I was them I would tell all my friends that ima a real life vampire 🧛♀️ 😂💪🏽😂
I don't have XP but I do have SLE and am affected by the sun. I feel for these girls.
Wow! All of them!😳 Thank you for spreading awareness. Hope you guys find an answer to where you can't go in the sun again
Reminded me of that horror film in which Nicole Kidman has a child who is allergic to sunlight, the climax was unexpected ! Loved that film (forgot its name)
The Others!
Yes that movie is good, I saw it again last week
I was curious up until I saw that's it's a horror film and I'm like, oh hell no, good I aint gonna watch it.
@@khonkhosilelihle7414 it’s not too bad at all! It says it’s horror but honestly I disagree on that, it’s really not that scary 😊
Brad pitt did one called Dark side of the Sun. Where he is allergic to the sun.
Why the Brasilian girl continues to expose herself in the sun? 😰, I don't understand...
Her parents possibly didnt know what was wrong with her or couldn't afford medical treatment before the damage was done. Google images shows how bad this condition can get in warmer more impoverished climates.
@@theopulentone1650 yes, but she being an adult doesn't thing that taking pictures outdoor was dangerous? her boyfriend didn't thing about that either... It was surprising
@@leticiabincoletto8166 seriously! She's walking around in a sun dress. Maybe she should have used some of the money she got to buy some of the headgear and that that the others were wearing.
@@theopulentone1650 the video says she was diagnosed at 2 years old. Either her case is exceptionally severe/comorbid with other syndromes (depending on the mutation she might be hypersensitive to other environmental triggers like certain chemicals), or she's had a lifetime of negligent care.
@@IguanaMom She said she uses sunscreen. Am I the only one who was listening to the audio?
Aww this is so sad
Lizzie seems like sweetest soul ever 😭
I had sensitive skin and I was allergic to the sun and anytime I go out in the sun my face would be red and rashes was all over my body and I would look like a balloon and would have to take a oatmeal bath and use different soap now when I get in hot heat or the sun I would get sick throw up get light headed and weak I’m sorry you have to go through this sis you girls is strong 💗.
The bluey hats 😭 so jealous
If I had children who had this, I would probably move to a country with the lowest uv levels like Iceland? So that they can live as free as possible always.
My heart goes out to them all ❤
UV still comes through.
How scary for the parents and children .More likely to get different cancers not just skin .Bless them 🙏😔❤️Love there love for life. I pray they have long healthy Lifes.These are the stories that I enjoy on this channel .Lizzie rocks can't for get her
The Bluey hats are so cute!
This disorder always makes me think of The Others
Why not move to a colder climate? Less rays there.
I thought that too, but honestly it is not always easy to pack up lives and move. They adjust the best they could there
I agree. I'd have left already. It May not be easy to pack up and leave ,but it would be worse if they get sick 😢
I've seen this video before. A few years ago. It would be nice to see an update.
Ah....I see this is a combo of people with a similar condition....
Yes an update would be nice .
The brazilian lady just had a baby 😍
Such brave people
Very brave.
Our neighborhad this issue and she also couldn’t be under certain lighting, she used wide brim hats, long sleeves etc etc..
sleep during the day, stay awake at night
Poor girls must get so hot, living in Australia and having to cover up just to go outside.
If the parents has the disease, why would you want to put the kids through it? That's the sad 3
they don't have it... at least in the first two families
I was also wondering how come they kept going after the diagnosis 😢
Being allergic to sunlight and living in Australia 😭
Such a cute family, I wish them the best!
Families*
Thank you for the video. Your girls are awesome.
Tbh I am allergic to sunlight as well I just need to wear sunscreens bc it’s my allergy is pretty mild
Wow! And they live in Australia...
God Bless their Family🙏💖.
At least they live in Australia, where kids frequently have to wear a hat when they go to school!
I don't understand why the last girl's is so bad. It's like she didn't get the treatment necessary and had severally damaged her skin. The four prior people looked fine.
Education and money. First two families had access to way more
@@rachaelcameron1542No. They just didn't care to follow the advice. XP diagnosis at 3, they would of been told what to do. They and now her, refuse to do it.
They can go out in daytime when cloudy? There are some that can't even bear artificial light
I feel most for the last woman, but i wonder why she isn't wearing the protective hat that the rest of them had and also why she isn't covering up her skin when outside. I would be protecting what little I had left.
Could someone tell me a good Uva/Uvb handheld reader like they have and where to get it? I don't have the same type of condition but I do have a skin allergy to UV light and struggle with it daily. Especially because my condition was discovered after we moved to Florida.
Brave people 👍
Dear Lord, please find a closer cure for XP, give them better gear, protect them from cancers and make sure to surround them with loving support and understanding for others looking in and for the families. Amen❤
There will never be a cure or even hard research I to XP be a use it is rare and there is no money in it. Why would they cure things and cut off their customer base?
I would make hat brim a bit further out in front to keep plastic off your face.
And living in Australia, that's tough. 😩
Perfect future candidates for working the night shift at work
Ya'll are awesome parents.
So, they can’t be around a lot of lights inside of buildings, either. Wow!
i have cold urticaria..... do i do understand the condition in a different way....i am allergic to the cold...... the world seems enjoy a temperature of 70-75° while i am freezing at those temperatures.... it makes life hard, but i can't even imagine what it is like to be allergic to the sun, water, ect. like others have to deal with.....i hope everyone with the rare conditions have a great life despite the hardships.....please keep striving :)
They should move to Scotland!
If I had a condition where I couldn’t be exposed to sunlight I would probably stay inside all day. And I usually stay inside anyway for reasons like the heat and preferring indoor actives like video games. Why do these conditions where you have to avoid the sunlight never seem to affect those that don’t like going out anyway? It’s not a condition anybody would want of course but I am just saying they probably wouldn’t be as bothered by it.
You should move somewhere like Seattle.
+barcroftmedia *_Xeroderma pigmentosum_** is no joke. Melanoma is the tip o' the proverbial iceberg.* Adverse neurology is all too common in this recessive-genetic syndrome.
What happens when they're at school??
Aww God Bless Them!
No doctors bothered to check the most probable explanation ? Everybody knows vampires can’t go out in the sun 🌞
Fascinating. This condition affects women.
Boys can have it too.
This video reminds me of the movie Midnight Sun.
You need to move in Finland. It's dark and cloudy here most of the year.
What brand sunscreen do yall use?
I’m curious why the Brazilian lady at the end seems much worse than the other girls in this vid?
Because she hasn't covered her body like the others have for all those years
I understand you!