The Sisters Who Can't Go Out In Sunlight | BORN DIFFERENT
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- Опубликовано: 17 окт 2024
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SISTERS Amielle, 8, and Taya, 3 from Sydney, Australia both have Xeroderma Pigmentosum, a very rare condition that means if the girls are exposed to sunlight their skin can be burnt very badly. Amielle’s first burn happened when she was just three and a half months old. Initially doctors said that she just had sensitive skin and it wasn’t until Amielle was 7 that she was finally diagnosed with XP. After the diagnosis the family took a DNA test and discovered that Taya also has the rare condition. The girl’s parents, Nick and Yvette have to take a number of safety measures when the sisters go outside. To ensure they are not exposed to any UV light at all the girls have to wear a thick layer of sunblock, gloves and a protective visor before leaving the house. Nick and Yvette hope to raise money via GoFundMe to build a covered play area in their garden so the girls can have fun outside freely. Due to their condition Amielle and Taya can only visit the beach at night to be completely safe. Truly visited the family during one of their evening trips to their local beach to see them all enjoy the seaside together.
Support Amielle and Taya here: www.gofundme.c...
Videographer: Chris Butle
Producers: Tom Jones, Yasmin Walker
Editor: Paul Zeller
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The way the brother was so excited for them to be able to take their gear off was so awesome.
Kids tend to act over dramatic especially when they know there's a camera or video recorder around.
@@unicornmadness6286 I'm sure there was a bit of this going on, but the crew had been with us all day, and by the end it was a genuine excitement of the freedom of not having to wear their gear.
@austism mama Thanks for your loving reply, yes he is an empathic and supportive brother. Cares so deeply for their safety. It's hard on him too (of course!)
@@nana-ou4kp llppp
Ik right
My friend growing up had this and ended up moving to Norway. It is dark and cold there fairly often and she is able to live a more normal life. In fact, for like 3 months there's no sun at all. There is a few months where the sun never sets, but she says most of the time the uv rays are low enough she can still go out.
Yeah, unfortunately, Australia is definitely the wrong country to live in with this condition.
@@kimmiestell849 so was Sunny California. She loves where she lives. She has to stay in some days, but not near as often as before. She used to only get to be out at night.
I´m from Norway and thought of this.. Bergen has rain over 200 days a year, and the North like you said has months with no sun at all. Happy to hear she likes it here, she´s so welcome
Ireland would be another good place for them to live.
She applied to a few countries, but was accepted in Norway. She does all her work online so, she wasn't going to take jobs from people there. Plus, she has a rare medical condition. She loves it there. It is on my bucket list to visit for sure.
My brother's friend had this very extreme. Passed away when he was about 20 years old cuz of it. He was only allowed to go out at night without the protective gear and to be able to go to school the windows had to be covered with a special material. When he was about 12 he was allowed to ask for a wish and his wish was to go to an amusement park at night so he can enjoy it without the gear and for a longer amount of time. The amusement park opened it for him in the evening and he invited family ave friends. He was a very special person. So sad he passed 💔
That does not sound good for those little girls. So sad.
@@MA-mh1vs they seem to be in a better situation though I think( I hope) as they are able to take their gear off when still light outside.
@@myriamlip1198 I would imagine cancer is their biggest threat and not just from sun exposure. The father said they are at risk of all sorts of cancer due to their condition. One can protect them from the sun but what happens inside their body is just as dangerous. Hopefully they will not die so young, that is just tragic when lives end to soon.
@@MA-mh1vs true, hopefully they'll be ok
I'm sorry for your loss
I'm so happy that they don't let this condition stop them from having fun! Also props to the parents for still going on outings, just at a different time of day, making sure that the girls feel as normal as possible.
Thanks for your comment, yes its been a big adjustment to our lifestyle and sleep patterns especially during daylight savings when sunset isn't until 7.50pm at the moment!
@@yvettewalker1559 wait you have the condition?
@@iivedive It's just Amielle and Taya who have XP. My husband and I are carrier of the recessive gene and our son did not inherit it from us.
@@yvettewalker1559 is it something that can be found as an adult or is it usually only caught in kids?
Such loving parents you can tell they REALLY care about their kids
Awww thanks for your comment!
The fact that the kids are into Bluey says it too 😅 I love Bluey!
So sad. they have to do all their activities at night
@@pallavisreetambraparni6995 is it all 3 kids or just the sisters who can't go out in the sunlight
@@mehchocolate1257 Just the sisters
When the girls ran outside there house, screaming "freedom!!!", And at the beach, w/out there gear, My heart. 🥺❤ Such precious girls. ♡
Taya shouts out "freedom" every time she runs outside at sundown. Gorgeous, joyful, yet full of sadness as a mum.
Yes
They're thousands of times more likely to get cancer... I seriously hope they remain healthy forever ❤️
Thanks for your kind comment xo
@@yvettewalker1559 you do a great job protecting them !
i hope and pray they do too. they deserve all the love and best wishes in the world
And in Australia which already has the highest rates if skin cancer in the world! That sucks. I'm from NZ, but moved to Minnesota as a kid. Once when I went home to visit in the summer, I blistered in the sun. It's crazy how the thinning ozone in that area combined with proximity to the sun combine to make a really strong mix. And I have never even had so much as a sunburn in Minnesota.
Yes
Ok but can we talk about how existed for his sisters the brother was? It was so sweet!
Right!! It was adorable
Thanks for your loving reply, yes he is an empathic and supportive brother. Cares so deeply for their safety. It's hard on him too (of course!)
@@yvettewalker1559 wonder mum ❤
@@yvettewalker1559 All of your kids seem to be very intelligent and empathic! I am sure it is, and I am sure you and your husband are here to support them! I hope you have people to support you as well
Love seeing how excited their brother gets when they can take off their gear. So supportive and sweet!
Thanks for your loving reply, yes he is an empathic and supportive brother. Cares so deeply for their safety. It's hard on him too (of course!)
What a beautiful family and how strong their girls are
Awww thanks xo
@@nana-ou4kp ma’am your on the wrong video 💀
The fact their brother cheered with them when they were able to take gear off is heartwarming. He's really wanting to spend time with them and truly loves them but he also wants them safe
I'm grateful for these videos.. Honestly if i saw this family on a beach in Sydney, i'm ashamed to say i'd probably think they were are really odd, overprotective family, and judge them a little bit for going to that extreme. I'm glad this series exists to try and put an end to judgement. It's also so nice to see that they don't let anything stop their kids from having a great childhood :)
I can't believe that these girls have that while especially living in Australia where it can get crazy high as we are going into summer too! Good job on striving forward together as a family 💕
Thanks for your kind comment xo
Conditions don't discriminate
It’s good that there are ways they can still have fun, and enjoy every moment despite their conditions.
P
Absolutely! We will continue to find ways and fight for our girls xo
CD E Rf
The brother's enthusiasm. That "YEAH BABY!!! WOOOOOOO!" speaks to me on a deep level loo
As a 3-time melanoma survivor, I have tears in my eyes for children so young who have to cover up much more than even I have to. And as a parent, I can’t imagine the pain these two feel in their hearts for their beautiful children who have to endure such hardship. Bless you all.
When she said "I'm free", it broke my heart. She's thankful for being under the sun which is something that healthy people like us get to enjoy everyday. It makes us realize that we should appreciate and be grateful for the simple things in life.
It’s the brother being just as excited for them for me 🥺
Thanks for your comment, yes he is an empathic and supportive brother. Cares so deeply for their safety. It's hard on him too (of course!)
Aww her saying “I’m freeeee” was really sad 😢
Taya shouts out "freedom" every time she runs outside at sundown. Gorgeous, joyful, yet full of sadness as a mum.
These babies are so strong and resilient. I know how excruciating and difficult a skin condition triggered by our natural elements is. I was diagnosed with Acute dermatitis in my early 20s. I could not be exposed to the sun , sunlight or to sweating as my arms, legs, almost my entire body would breakout in huge blisters. Blisters the size of golf balls, like a severe skin burn. It completely stopped me from doing the things I love, surfing, running, etc…After visiting several dermatologist, I was diagnosed with Severe Eczema triggered by sun exposure and heat. I lost count of how many times I ended up in the ER with third degree burns that would caused tearing , laceration of the skin. In the summer I was required to dress in long sleeve and long dresses as I could not expose visible parts of my body…for years it made me not look forward to the summer as there is no cure for eczema; you just have to learn to manage it. A few years ago; after being a vegetarian for couple of years I finally decided to go on a plant base life style…about a year after that I noticed that during that summer I did have any flare ups. Finally last year I picked up running outdoors again during the summer and my eczema has completely disappeared. Was I, perhaps, allergic to certain foods, animal products? I don’t know. But miraculously by cutting out certain foods my eczema has vanished.
That's amazing your eczema has vanished, what a great outcome for you :) Thanks for your compassion xoxo
Wow very interesting story
Hey! Coming from someone who has severe acute dermatitis and food allergies to most animal products, it sounds like you had an allergy that was causing your skin to flare up whenever exposed to sunlight or sweat. Whenever I sweat, my eczema flares worse than anything and it’s so painful! Not only does the saltiness from sweat cause extreme pain in the open wounds, but when it dries out the salt causes your skin to dry out and crack even more than usual. Whenever someone asks me how I manage, I always say to cut out animal products!!!
Their brother's joy to be able to play with his sister is heartwarming 😊
These girls have such a positive output on life, I love how they are so happy when they can get their gear off!
Hello
They are truly adorable, like sweet little vampires that want to feel the sun without pain. I know that they can be strong and get through it!!! 💕
What a beautiful family!!! Holy cow the type of love that’s in this family is how ALL families should be!
The best place for them would be norway, iceland, countries where the sun most of the year is very minimal, it would give them a lot more freedom.
Right on. I’d probably say Canada because immigration may be easier. Both, Australia and Canada being commonwealth countries.
Yes!
Yup. I think of this too
I think they have a lot more outdoor activity in Australia even if only in the evenings than in the northern country where in winter it is dark and cold almost all day.
Winter in northern countries lasts more than six months. They will be there most of the day indoors. And the clothes in the northern countries need much more than all the protective clothing they are wearing now.
Yes there is less sun in the northern countries but I would not hope for an increase in outdoor activity.
And it is not known how the sensitive skin of girls will behave in a strong frost and an icy wind.
The family has answered the issues on moving and they said they had considered it but wouldn't be moving but said maybe when the kids grew they could choose to move if they wanted.
Beautiful family! It’s amazing how the girls have adapted at such a young age.
Hi Andrea M. How are you doing today?
Thanks for your kind comment xo
@@yvettewalker1559 Hi Yvette, where are you from?
@@mikedenison121 .
@@dircedeoliveira8635 hi where are you texting from. I will like to know you. How about that.
That older sister already feels embarassment from wearing the gear… I wish she wouldn’t have to feel that way
That magical moment when they were eagerly waiting for the ‘safe time’ to feel the freedom without the gear was priceless.
That is so rough, I'm glad they have such a loving and supportive family
Would moving to a country with much less UV help at all? I grew up near London where we only had roughly 3 months of sun a year, surely that would be a much safer place than Sydney?
I agree, I had thought the same thing about moving somewhere with less sun light.
I live in Phoenix, AZ. I know someone with this condition. Imagine wearing a body suit in 112 degree weather, going to the park.
Right? I live in the state of Wisconsin, this is a non-issue here.
Thanks for your kind comment, yes we have definitely considered relocating somewhere with lower UV! We have all our support structures here in Sydney (family, friends, church family, school community, health professionals) which we have relied on very heavily since the diagnosis this year... Maybe the girls will decide that for themselves one day who knows!
@@yvettewalker1559 it's definitely a huge change that can't be rushed in to! Good luck with everything, your family is wonderful!
It makes me wanna cry how sweet the girls brother is, the way he was so happy when they got to take there gear off.
It sucks as kids and will still suck as adults but at least as an adult a lot of fun stuff happens mostly at night parties and dinner meet ups. They have amazing parents that help them through all of this and it’s amazing to see how even the brother is crazy supportive. Love this family!
Beautiful children. Beautiful family. Coming from a family with a sibling with special needs I appreciate the brother with his obvious love for his sisters. It’s hard to be the ‘normal’ child sometimes. They tend to get overlooked, just because it’s so overwhelming for the family to care for those with extra needs. The girls are beautiful and the focus of the video, but for me the boy was the one who impressed me with his kindness and strength. Who knows how many times he can’t do things because it’s hard for everyone to do it together. Hopefully his sisters will never forget how he’s there for them.
the girls appreciate so much each second when they are free regarding the sun this a lesson for each of us to live more intensively quality of life second by second.
Thanks for your thoughtful comment xo
I love how these parents care so much, and take this condition seriously, but don't let it stop them from being kids!
It’s so good how the brother is so excited for them to take off there gear is just amazing and the cutest thing ever for them
When the girls shouted out that they were finally free, I felt overjoyed. Loads of love for them and their entire family ❤❤
I cried when they took their gear off, just the sheer joy at the freedom. I’m glad they’ve found ways to still enjoy their lives and in some ways how wonderful the sisters have each other through this.
Girl in the Dark by Anna Lyndsey. Great memoir about a women with a similar condition. Really brought more understanding to me to try and get a glimpse of what it would be like to have xp. ❤️
This is heartbreaking, those poor little girls 😢
Atleast they can tell people that theyre real life life vampires so no one messes with em!
they will live a happy life as long as they protect their skin
Actually Vlad the Impaler / Dracula was actually suspect to have this condition
It helps knowing they have supportive parents and brother that take care of them
you are such good parent , the unconditional love you have for your 3 kids is felt through the screen
Obviously, you first must feel for these two little girls but I also can't help but think about how many tears the parents have shed over this diagnosis. Heartbreaking. I wonder if it might be better to live in a colder country where the days are shorter like northern Europe? At least they wouldn't be as trapped in their homes as much as they are now.
UV rays are present even in overcast . they would have to wear protection no matter what
Still the same.
Many many tears... it sure has been a huge adjustment and a lot of grief to deal with. Not what we hoped or expected our lives to look like.
@@Candicedickinsonllc During the winter months in northern Europe the UV index is 0.
The UV index in Australian winter is still around 4. In northern Europe the UV index reaches maybe 6 in summer. In australian summer the UV index is 12!
That brother is amazing!
The moment they could take it off and watching his excitement, it brought tears to my eyes...
"YEAH BABIIIIIIIII!!!! WOOOOO!!!"
Like, that was the best part of his day, how sweet! 💕
And lol, him yanking the headpiece off his littlest sister: "GET IT OFF!!!!!"
You can see how much he wants them to be able to play outside...
And when the eldest sister yelled: "I'm free!!!"
Oh my... 😭😭😭😭😭
Beautiful, wholesome moment
from an amazing family💕
They deserve the best
Their parents are so sweet and truly amazing humans. Such great parents. Their brother's love for them is so visible. His excitement over them being able to feel free and play with him without gear is absolutely precious.
Oh my god my heart. The brother getting all excited for them. Bless him. And then when the girls got to take all their gear off ❤️
I love how happy their brother was with them when they were able to take off their gear at the beach. He was ecstatic and you can tell he feels lonely/guilty playing alone or doing things on he was happy hey could take it off and the could all join it
These girls are so lucky to have each other. They know exactly what the other one is going through
I realized how free i am. We were born different in our own way. For the two sisters, i wish you'll enjoy life despite of your condition. Sending love from philippines.💛
I cried when the brother was like " Take it off!!". He was so happy!
As someone who suffers from urticaria which has no cure (but very much a slight condition compared to this) I can feel them..😢..I hope they'll be able to be free more often ❤️
Thanks for your kind comment xo
Same! It doesn't take much time in the sun before for my skin breaks out in hives and blisters. I truly hate summer. I get so hot being completely covered up. Even with loose moisture wicking, breathable upf shirts I still feel sweaty and gross. To make matters worse sweat can cause breakouts too. But all things considered this helps put things in perspective.
i have cold induced urticaria, which is kinda the opposite from the sun allergy thing! i get hives from cold and even sometimes things like refrigerated pickles (that’s happening rn lol)
It’s so sweet to watch when they just run outside and into the ocean xx
In German, children that are diagnosed with XP are called Mondscheinkinder which translates to moonshine children, since in severe cases, they can only go outside at night
Bless them! Must be hard! They should come living here in North England as here you rarely see the sun!
Really..... Wow I want to come there because I suffer from urticaria.... I love sunlight but at the same time I v
Can't manage too much of it
They should live here in Sweden. In the north the sun never goes up in the winter at all.
I mean, it's really sad that these girls have to deal with this, but they seem to have amazing parents who would do anything to help and protect and support them. so kudos to you guys! most kids dealing with such life changing disabilities aren't as lucky.
Props to the parents for making sure their kids can live normal lives while still protecting themselves! God bless them all! ❤️❤️
My mother has albinism and has to live similarly. She has had many skin cancers removed (luckily not yet melanoma). We too keep all the windows covered up for her. She also has extreme photosensitivity. I myself am a very fair redhead and have to be rather cautious of the sun as well. I feel for those kids!
Keep up the support big brother and parents. May you always be there for those precious little girls❤️
Their brother was so excited for girls to take their gear off. How sweet!
I think i would move to a place where they have alot of dark days, polar nights...
Hello Debbie how are you doing?
Where are you writing from?
What a wonderful family so glad that the girls aren't letting their disabilities stop them from doing anything plus their brother is helpful to them too,I enjoyed watching these shows and learn about them too thanks for sharing these.
Omg what a sweet caring brother 🥺🧡 he got so excited when they were finally free , he was like get it off!
These kids are so sweet and adorable. The parents are admirable.
This reminds me of that summer camp for kids with the same and similar conditions where all the activities were held after sundown.
They are so beautiful praying for your family!
Those poor girls...this made me cry...
My best friend when I was in primary school had a similar condition to this. Scientifically I think it was completely different but she had the exact same symptoms. Too much Sunlight would make her skin go red and blister much faster than people without her condition. She always wore a massive floppy hat and gloves and didn't own a single t-shirt cause she would never be able to wear it. She would often have to sit inside during break in the summer because she only could only be outside a small amount of the time. She definitely quite struggle sometimes with the social aspect of it. I think she felt left out a lot and some kids would call her names when her face went red cause of the sun, or they laughed at her hat. But, at the same time, she was really optimistic and always made the most of what she did have. Recently, she started taking part in a drug trial for her condition and it's going really well! She doesn't know if she has the placebo or not, but for the entirety of last summer she didn't have to wear her hat at all and she didn't get any reaction! I'm really happy for her and I hope the girls in the video have something similar come to help them!
Poor girls! Not the best climate to be in with a condition like that
they are well protected . UV rays out outside no matter what location they are in
“I’m free” that sounded so sad
Awwww! So fun to see another XP family showing the kiddos in such a positive light!
Hello
this was on 60 minutes in Australia, I remember sitting there looking at the tv how sad it was, but I saw that the girls were just so happy. There happiness was amazing, even though they have to wear the gear, they are just so happy.
they look like cute beekeepers there such sweet little girls so glad they still can have fun,be little kids the beach so pretty
These girls are so strong and amazing!!
i had a friend who has this condition. i unfortunately haven’t seen him in a few years as i moved schools, but i know that he is doing well! he moved into a bigger house so he could have an indoor garden - i saw pictures on his mum’s instagram, it has a climbing wall, a swing, a slide, a tunnel maze and more!
@CJ i know it really does lmao
"Midnight Sun" film scenario in real life..😑
Bless you girls🙏🙏
It’s so kind that the brother was waiting for the girls to take there gear off
Atleast they have each other. Having a condition myself I wish I had someone that could understand exactly, the girls are lucky to have each other
its terrible that they have this condition but in a way its great that they both have it and can help eachother through rough times
I learned about XP from a movie and now we are here with the living and breathing siblings who have it such an amazing thing to learn about And I love how there bother is so excited to have there gear be taken off and how they was excited as well
Tomorrow on truly: My billion cosmetic surgery that made my lips bigger than my brain doesn't define me
11/10 total truth
🤣🤣🤣Dead
Hahaha omgosh ACCURATE
For real. One day they will upload meaningful stories like this and then the next will upload a video that romanticizes teen pregnancy. It's so bizarre 😭
😂😂😂😂😂😂😂😂😂Hood
Girls are so blessed to have such wonderful parents smart parents.
God Bless these beautiful little girls and the whole family !!!! I see bluey on one of the girls hats my 5 year looooooooooves that show we watch it in North Carolina!!!
what a sweet, loving family❤️ i wish them nothing but the best!! one thing i was asking myself is if they ever considered moving to another country where the climate is different and there isnt so much sun as in australia? then again i can understand that they wouldnt want to leave australia, it‘s beautiful there (i went there on holiday a few times) and of course they have all their friends and family there. either way i wish them nothing but the best, this video was really so touching and inspiring❤️
Oh wow ! So nice for them to be able take off their gear and be free for a moment was just awesome to see 💗
Such beautiful girls and family, so sorry they have that condition, it's not fair
I cried this is so precious 🥺
What a wonderful family 💖🤗🙏!! Love 😘 from USA 🇺🇸🥰
When they ran outside and said freedom... that made me cry 😢😢😢
Bless these little beauties 😍
Love their sunhats, so cool 👍 Beautiful girls and superb cartwheels 💕 Lovely family ❤️
Yes, absolutely! Such a wonderful family, and dear friends of mine. They have a real faith in Jesus - it because of this that they can continue on with hope, strength and love. If you are able to donate and/or spread the word, this is the Walker family's Go Fund Me page. Thank you! www.gofundme.com/f/help-ami-taya-walker-play-and-stay-safe
These girls were blessed with an amazing family.
I watched a movie called midnight sun about a girl who has XP. It really made me realize that I should enjoy my life and be thankful for what I have.
Great parents and the girls seem well-adjusted, like the parents make sure they don't feel like they're missing out on anything. I wonder if the parents are able to take their son on solo outings during the day, so that he doesn't feel held back or unable enjoy outdoor activities in the sun? I'm sure they probably do, it seems like they've got all of their bases covered. I just know that sometimes the children that grow up with siblings with disabilities sometimes feel left out because so much focus and attention is directed towards the siblings with the disability, but their brother obviously cares a great deal about his sisters.
I also wonder if there are protective suits available with cooling systems inside so the girls are more comfortable in the Australian heat?? It'd be worth looking into and possibly starting a GoFundMe for, if the suits are costly.
ruclips.net/video/uC81BtjHjxE/видео.html
@@sharity3289 that is good though of you, where exactly are you from?
lmao the brothers excitement at 4:36 "GET IT OFF!" :D so cute
4:33 Why did this almost make me cry "GET IT OFF! 🎉🎉🎉"
Yea. There comes the tears. Excuse me...
I need a moment 🥲
They have the best parents that get down n play with them I wish my mom n dad would of played w me like that when i was little 😔 I feel so bad for them but they have a great family their brother really loves them too..stay blessed 🙌 🙏 ✨
Love and light to you all. Beautiful family
I’m glad they have each other so they’re not alone ❤️
I bless the Lord for keeping their spirits high even with this skin condition of theirs. I am also thankful to Him for protecting their health, even with gear on. I wish them the best, and let it be known that God loves them!
And God loves each and every one of us so much that He sent Jesus His ONLY son to die for your wrongs so that you may be forgiven by God (who rose Jesus from the dead after 3 days). Accept Jesus into your life and as your Lord and Savior while you can be! I am not forcing you to do so, but I STRONGLY encourage you to.
When I was younger I used to hate the sun because I didn't want to get dark but now these days I spend endless hours in the sun i love the sun now so I can't imagine not being able to sit,lay in the Sun enjoying it! May the lord's blessings always shine upon these precious gift from god!
Videos like these are life lessons to appreciate what you have and can do.
Girls are so strong 👍👍👍👍👍🙏🙏🙏
Beautiful family ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
God bless her 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏