I love how happy their brother was about them taking off their gear on the beach at sunset. This condition affected the whole family.

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!

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!!

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'm albino and I think these sweet gals possibly burn worse then me. Never thought I'd see the day. Bless them

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

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.

With that skin cancer risk I'd be trying my best to get out of Australia.

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.

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 blister in any light due to my autoimmune diseases. I can’t imagine going through it as a kid, bless their hearts!

We are allergic to sunlight. Camerman: let's go outside and take a picture for the thumbnail

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.

That last woman needs some better UV protective gear.

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.

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.

Wondering why the last woman didn’t cover her self in the sun.

Wait so the last woman goes outside anyway? Without covering?

im so sorry, they are adorable children.

the last person seems ill advised to go out for walks in the sun like that. just go for a moonlit walk eh?

For people with XP, they look really good! They barely have any moles! (apart from the woman from brazil)

Bless them girls. I wish one day there would be science to help them go out into the sun without burning x

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

👵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! 🥵

And they live in australia as well :( that’s tough

❤They should move to Forks, WA.❤

Beautiful family. So much strength and positivity

Being in one of the sunniest countries too, they are very happy children

Your kids are beautiful and kind, wishing the best to your family.

Should come to Sweden, no sunlight here lmao

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.

So sorry for them, beautiful little girls, i hope they find a cure ❤️

Northern Europe or northern US might be quite pleasant for them

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.

Incredible family and so strong and strength and amazing and unbelievable positive and love there confidence and course and encouragement ❤

If I was them I would tell all my friends that ima a real life vampire 🧛‍♀️ 😂💪🏽😂

Thank you for the video. Your girls are awesome.

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

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.

I've heard of the condition and watched movie where the main character has it as well. It called Midnight Sun

Poor girls must get so hot, living in Australia and having to cover up just to go outside.

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 bluey hats 😭 so jealous

God Bless their Family🙏💖.

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

Aww this is so sad

Such brave people

The Bluey hats are so cute!

Salute to this parents who protect and love their children 🤚🏻🤚🏻💕

I don't have XP but I do have SLE and am affected by the sun. I feel for these girls.

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

They should consider moving to Norway or Sweden. Living in Australia with this skin condition is not smart.

Being allergic to sunlight and living in Australia 😭

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

Our neighborhad this issue and she also couldn’t be under certain lighting, she used wide brim hats, long sleeves etc etc..

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 💗.

A reminder to not take anything for granted. Even what we’d define as the little things.

I understand you!

Such a cute family, I wish them the best!

This disorder always makes me think of The Others

Wow! And they live in Australia...

Why the Brasilian girl continues to expose herself in the sun? 😰, I don't understand...

Why not move to a colder climate? Less rays there.

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 ❤

And living in Australia, that's tough. 😩

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)

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....

Tbh I am allergic to sunlight as well I just need to wear sunscreens bc it’s my allergy is pretty mild

Aww God Bless Them!

What brand sunscreen do yall use?

Brave people 👍

Ya'll are awesome parents.

I would make hat brim a bit further out in front to keep plastic off your face.

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 :)

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.

Perfect future candidates for working the night shift at work

This video reminds me of the movie Midnight Sun.

What happens when they're at school??

+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.

They should move to Scotland!

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.

So, they can’t be around a lot of lights inside of buildings, either. Wow!

If the parents has the disease, why would you want to put the kids through it? That's the sad 3

You need to move in Finland. It's dark and cloudy here most of the year.

💔

Please can you tell me where can I get the hat shield they was wearing from?

At least they live in Australia, where kids frequently have to wear a hat when they go to school!

Just like the movie, the midnight sun

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.

My friend has this disorder. She breaks out in hives all over her body.

Sundown camp too

You should move somewhere like Seattle.

Me too and then some people are Allergic to air and water 😱😱😱😱

We have a family that moved to our town for this reason

👍

E greu saraci copii dar cand creste c'è o sa faca 😮 toata viata asa chiar nu e nimic sa le protejeze pielea.

How does someone with this condition keep up on their vitamin D?