ฝัง
- เผยแพร่เมื่อ 14 ต.ค. 2024
- SUBSCRIBE to Barcroft TV: bit.ly/Oc61Hj
A TEENAGER whose skin is so fragile it bleeds and blisters as she sleeps has helped her parents raise £5 million for charity. Sohana Collins’ morning routine takes longer than most: on schooldays the 16-year-old wakes up between 6-7am while her mum, Sharmila, carefully unwraps Sohana’s bandaged arms, then uses surgical needles to prick her daughter’s painful blisters before cleansing and moisturising Sohana’s paper-thin skin. Sohana suffers from Epidermolysis Bullosa, a rare genetic condition commonly referred to as the butterfly syndrome because skin is as delicate as a butterfly’s wings. To support the Cure EB charity, please click here: www.cure-eb.or...
Video Credits:
Videographer / director: Bahareh Hosseini
Producer: Nathalie Bonney, Ruby Coote
Editor: Thom Johnson
Barcroft TV: / barcroftmedia
Barcroft Animals: www.youtube.co...
Barcroft Cars: / barcroftcars
For more of the amazing side of life:
For the full story, visit BARCROFT.TV: www.barcroft.tv/
Like @BarcroftTV on Facebook: / barcrofttv
Follow @Barcroft_TV on Twitter: / barcroft_tv
Check out more videos: / barcroftmedia
Download Barcroft TV on iOS: itunes.apple.c...
Download Barcroft TV on Android: play.google.co...
She's never pet a dog or a cat before. She'll likely never experience the feeling of a deep hug. She can't cry without fearing her skin peeling. But she wakes up everyday, goes to school, eats breakfast, and lives. That is pure courage and bravery in it finest.
And she still stayed strong....Your right by all ur exact words🤗
500th like!
@@good-xv8cp holy heck. I just wanted to give this girl a hug. I hope she can see we’re all rooting for her
@@dragon-like-tendencies9519 Yeah, she deserves better honestly.
amen
"I need to put eye drops in to make sure that my eye doesn't stick to my eye lid" 😭😭 Bless her, she is brave and courageous 💔💔🙏
Yeah :c
ikr.... and also hii other Nina! i’m a Nina too!
@@ninacate9158 NINA NINA NINA “said by the fish girl” 🐟 👧
Yesss .. It's so Painful to watch herr
For about a week I needed to do that,it hurt so much, I can’t imagine doing it every day!
"But i dont really remember a time when there was actually nothing hurting" damn :((((
Fggg
Yes that broke my heart
Ikr D:
That was the saddest part
i have a skin condition somewhat similar to this, just way less intense, and I feel the same way. There is always a part of my body hurting, and my skin cracks and peels all the time, but it is manageable. I can't imagine if it was even worse.
That must've hurt a lot. Hope her pain will not be as painful as she grows.
Me and my dad has this. We don’t have it this bad but still bad. When you grow up your skin gets stronger, so it will still be fragile just less
@@merakimate i hope the best for you
@@merakimate hope the best for you!!! ❤❤❤❤
@@merakimate Omg really? Dad and son with EB? I have EB too and I'm currently 17 years old. I hope the skin gets stronger as you're saying I haven't noticed anything to be honest as the years pass
Seeing that your dad has EB gives me abit more hope knowing you can get older with EB. like I mean... I thought people with EB barely reach 20 years so I kinda lost hope in my life and gave up on trying to do better
Her mom is so strong too, having to treat your own child’s wounds and having to see new ones all the time must be torture for her too...
Yeah, I really hope nothing bad happens to her and her family.
You get used to it eventually
🖤
Poutingpanda it is very sad,I have 2 siblings with this skin condition and seeing my parents change their wounds is very sad because they get them very easily and they are very delicate.My sister was once in the swing in our backyard and it ripped causing the sharp plastic to rip my sisters skin it was very painful watching my sister cry because it hurt I could feel her pain.Be kind to others and always try to be nice❤️
And she has to spend hours every morning and night wrapping her wounds :(
She is so pretty. She actually looks like little Gigi Hadid..
i was going to comment the same thing..... She is beautiful anyways
Yeah really she is❤🥺🙈
I commented this a long ago I can't find it lmao🤣🤣
True, gigi is as cute as her
This is what i'm thinking too, she's beautiful..
*Yet she is still one of the most adorable people I’ve ever seen*
Yes
Same
Yes
She sound so cute
She be so damn cute and whoever thinks otherwise I'mma socially backhand them across the face-
When I was younger, I had a classmate at my school who had butterfly skin along with some other medical problems. He was such a kind boy, he wanted nothing more than to help others and even though he was different on the outside, he was so amazing on the inside. He passed away in 4th grade, and my school made a memorial for him 💕
Fly high angel 🙏
Angel 🥺🥺🥺
😪
I’m so sorry to hear that! At least now he can rest peacefully :(
@@CaidenGamez what the frick
She suffer just to be alive
And us, these days complaining but our beauty
For me she’s 🦋 Butterfly queen 🦋
@Goddess Asuna hahaha
A reference to FIRST?
Synthesis 30 Ikr lmao
Synthesis 30 periodt
Synthesis 30 hello grammar police!!!
I've met her
Her twin sisters are my close friends
She's so kind and so pretty
On what occasion? Like I get it you pet through her twin sisters. But when? Like at a sleep over?
@Shayla Bailey yeah I will next time I see them
Omg so cool!!
Sureeeeeeeee
Actually. I believe you but were you in the video or not?
That mum deserves MOM OF THE YEAR AWARD!! she spends about 3-4 hours EVERY DAY bandaging her daughter😔😔😘😘😘😘god bless you and ur family
Brianna Moore-Cobb YAS U R A LEGEND U DESERVE THE MOM OF THE YEAR AWARD SHE IS A TRUE MUM!!!!!!
yes she does deserve MOM OF THE YEAR 😣💙
Right ✔️
ᗪEᖴIᑎITEᒪY ♥️♥️♥️
When she said “I don’t remember a time I was not hurting” it broke my heart
Shoto out.
Same...
Same
Right 🥺
@@maricruzavila2747 hi! Todoroki!
Yeah
This makes my cry because I used to complain about how I looked or felt. I can't imagine going through this every day. I am never going to complain about myself again. Stay strong girlfriend ❤️
Hi. This comment really upsets me,
Theres literally no reason for you to not complain just because that's the way her life is. You should never feel guilty over having your own problems, even if they feel insignificant compared to the problems of others
Really?
That happened to me too ava doos
Me too.. ive puckles on my face and i complain..but seein this video.. omg Never complain
Lets be honest, she's quite uniquely beautiful and when she speaks she has a cute voice.. so pretty.. but please be safe and take care of yourself including your family god bless you.. someday someone will find a cure for you so dont lose hope just pray😘😇
I hope she's better now, it's 2019 😔💜
ikr😇💜
She is betuiful just the way she is
Pharmacy doesn't cure you,They rob you,But I hope she could be cure
No praying won't work
She's so pretty and she has a beautiful soul. God bless her and everyone in her life.
You annoy me.
@@XvCiiA why does it annoy u lol????
XvCiiA Your existence annoys me.
@@XvCiiA omg you are breathing that is so annoying 😵😊
Bloody hell people no need to get angry at each other😑😁🇮🇪🥊🙂🎸
Fact: butterfly’s can’t see their own wings so they don’t know how beautiful they actually are... so maybe you are like a butterfly 😊
Yeseee
I don’t want to ruin the moment buuuuuut😅
That’s not true
Butterflies can see their wings
@@spongebobsquarepants619 too bad you ruined it anyway
*SNIFF* AGREED!
@@spongebobsquarepants619 well that…
Her face ,She’s look like gigi hadid ,she’s pretty
I noticed that too 💜
Truely
I thought the same too
And a little bit of Bjork too
Anyelina Barboza oo
She's pretty the way she is. She is unique in every way. She is strong in her own way!
You are right everyone is unique in their own way!
Yea everyone is strong and pretty and unique in there one way
100%
Her beauty is inside and out. Making her extraordinary.
You guys see her , how strong she is and then you complain about having pimples
ayesha zafar Okay, hun. I’m not trying to be rude or anything, but acne is a very horrible experience. It is painful, it damages your skin, and it sometimes also itches. Just because you might not have acne, don’t assume that it’s not painful.
@@yuckfou7085 i am not talking about acne but like pimples . Plus i do have acne and i know how difficult it is to deal with but nothing compared to the sufferings of the girl .
* Dolan * don’t ever compare something as small as ᴬᶜᴺᴱ to this.
curlyheaded.chayy who said I was comparing it? I was saying acne is also painful for some people who have sensitive skin like myself. So technically sis, your the one that compared it.
ayesha zafar I wasn’t trying to start a fight love, I was just saying. My baby cousin had a similar disease to this and she passed away. The sensitive skin runs in the family. So some people really suffer with acne more than some others do, like myself.
how are people scared of her she is so pretty! i would do anything to be her friend
Awww that's so nice of you and BTW me too cuz she is SOOO pretty and kind♥♥ she looks like a beautiful princess
By the way who wouldn't be friends with duplicate of Gigi Hadid
@@mimib5151 when did I said that looks matter?! I just said that she is pretty and beautiful -_-
I KNOW RIGHT
I really wanna be her friend too!!!
In my opinion she’s actually really pretty I was so distracted by how pretty she was I forgot she had butterfly skin☺️
@Takeshi Bennett omg😭😭 when did she pass??
frostbeat_, your rude
Takeshi Bennett ??????????????
Takeshi Bennett wait what?? She’s dead omg poor girl ):
Mo Mo EXACTLY RIGHT THATS WHAT I WAS THINKING
I’ve noticed that most people born differently are always so incredibly brave while battling through their conditions. So admirable 🙌🏽
I have asthma and I don't really understand why people think it's a big deal so maybe people with worse conditions don't think it's that big of a deal either.
Joman101 exactly I have asthma too and people think it's a severe condition when all you need is an inhaler.
That's because human beings tend to take a lot of things for granted. Take for example how much people waste good cooked food, while plenty of people elsewhere are hunting rodents just to get by.
LovinBeingNatural people don't make as many documentaries about the people with illnesses that don't act brave
DarkZerol Exactly what I was going to say. You appreciate what you have in life when you’re less fortunate. For instance a person who is rich will usually take their money for granted. People with a terminal illness know that they’re going to die young so they appreciate every single day they have on this earth.
I mentally can't understand how she is so happy, this girl is a lion, I'm in disbelief at how well she seems to be doing. I hope the best for you.
not tryna say ur wrong but she sounds pretty sad to me
Thank you so much for all your kind support !
In these difficult times we would be so grateful if you could share or even donate, to help fund life changing research 🦋✨
www.cure-eb.org/
www.justgiving.com/Cure-EB
She is SO STRONG
@@CureEB woah...! Legit? 😮 Sorry, I'm just really skeptical of these types of comments asking for funds and donation but they turn out to be scams. But you seem to be legit
She's beautiful. No matter how she looks. She looks like a girl from another universe.
That’s rude..she IS a beautiful girl from HEAVEN
I feel like she is trying to say it in a positive way but when she commented it sounded negative
@Nugget The leopard gecko 🤣
she's literally prettier than me!
@Nugget The leopard gecko your an alien too
No joke, she’s pretty pretty
OMG!! Thnx for the likes. Btw I don’t just say stuff for likes, I truly mean it... 💜
Maddie Vedder ikr
Yes 💙
Um ew no her personality is nice but other then that😝
@@omgshefish8118 did you just call her ugly cause she looks normal to me
I was honna comment the same thing shea really pretty
There is a girl like this in my first period class. It hurts me to see her like this everyday but she embraces her condition and is a strong girl.
Kayyy May God bless her. What a strong girl ❤️
I want u to tell that girl shes a legend for dealing with that god bless these people
God bless send her lots of love from Lucinkle❤️❤️❤️
Lucinkle thank you :)
I hope that you are good friends with the girl in your first period class, I’m sure she is very nice
“We were terrified of picking her up or doing anything with her” Thats horrible, and the poor girl she must be in pain 24/7
Thank you so much for all your kind support !
In these difficult times we would be so grateful if you could share or even donate, to help fund life changing research 🦋✨
www.cure-eb.org/
www.justgiving.com/Cure-EB
@@CureEB i would love to but i dont really have any money in this times.. my moms recovering from a surgery that she got yesterday and this year has been rough especially with all the prices of stuff going on. i hope all of you are doing well!
This girl actually goes to my school. She is way older than me but sometimes I see her and she looks happy w all her friends :)
Edit: For everyone who doesn't believe me don't. I have nothing to prove to u and idk why I would lie abt someone being in my school. Honestly I just wanted to say that she is doing fine. Sorry for updating u.
@Claire Collins not telling u lol internet safety
But it's not in america
Sw Wong nO, just like if you live in what country not like your whole exact address
Really I think you are lying 😂😜
@@ilovebtsandarmy8264 ikr
I like how cool she is with her condition and not self loathing.
Wish I could make her pain go away
Geez Louise well I can’t so deal with it
Geez Louise preach it
You're a very kind and generous person!
I thought ur profile pic is Ryan Ross..-
Can i help please 😊
she is not crying but why do i feel like she is crying the whole time
It’s the liquid that oozes out of the skin, I have gone through this, now it’s only between my nose and lips
@@ultimategod542 yikes
You're right actually
lots of comments about her but let's give Mom a huge applause! It seems all the people that have some horrible condition have a mom who is completely selfless in the process and usually a dad who is quietly in the background keeping the family going.
3 cheers for Mom! You're the best!
That's what I was thinking too. I have scoliosis and also VERY supportive parents.
*I love how she doesn’t let anyone bother her and she loves her life like a normal person and goes out with her friends 💙*
Yikes! Sorry your pfp ❤️❤️
The fact that people have the nerve to dislike this video is just so rude
Their aim is to dislike every video they see, even if it's death of their mother or close friends..
Don't assume that they're disliking it to be rude.... Some people may have disliked it because of how sad, bittersweet, and triggering this story is...
it's from 2 years ago I wonder how she's doing now
pray that she is doing fine 🙏
Xpadilidochus mhm God protect her 🙏🏽😞🥺✨
@Noa Glaser omg cool
@Noa Glaser how is she?
shes 19 now
I can't begin to imagine how painful that must be.
Anitha Helvi it’s horrible. No person should have to live with it😔
@@hughjass5125 True. Life isint fair!
I feel so bad for her but she's gorgeous
I feel bad for her too but she's not pretty or gorgeous.. but her personality is awesome
she is very pretty, and I feel bad for those of you who can’t see it
I Was Here I feel bad for those who are blind and lying about her looks
frostbeat_ go to hell
100th like
I agree
The mother is very dedicated, 1.5 hrs every morning.
Ikr, god bless!
Yeah cos she is a mom❤
@AL CY for me its normal ...because moms do everything for their child...so its normal to be with child for 1.5. Hours more over she is ill
It’s her child, she is happy to spend that hour and a half with her.
SHE HAS TO. And I respect her for that
I know her skin is fragile, but this girl is unbelievably strong. Not just because she continues existing, but because she chooses to make the most of life, have fun with her friends, fight to find treatment for people like her. Thankfully, awareness for EB has been on the rise, and fundraisers and research teams are working tirelessly to find a suitable treatment. We need strong people like her.
The fact that she looks similar to the little Gigi Hadid 😊 what a strong young girl !
I was thinking that too, I wish that there will be cure invented for this someday.
Ikrrrr .. Ikrrrrr !! No lie
Eye to eye!
i was thinking thinking that too omg
Thank you so much for all your kind support !
In these difficult times we would be so grateful if you could share or even donate, to help fund life changing research 🦋✨
www.cure-eb.org/
www.justgiving.com/Cure-EB
She’s so beautiful I hope no one bully’s her she is a angel
Edit:Sorry a lot of people where saying that I spelt angel and not angle XD sorry!!!Thank you for 1k likes!!!
*Angel
Yes, she’s acute angle 😉
She is a cute angle ooohh😍😍
@Kristin Owens sorry I just get mixed up 😂😂
Angle?
Imagine having that condition and have to worry about your period
Armyyyyyyy
....I would just cry. She is so strong...
Ouch..
jimin.jpeg uwu omg 😱 that would be the worst
K X not always, I’ve done the pill and shot and still got it
She is actually so pretty inside and out and its sad that she had to suffer like that everyday...
What a love! And what a sweet mama! What a horrible and limiting condition. I have a connective tissue disorder that makes my ligaments loose and fragile and can really sympathize with a lot of these things. I’m so glad to see her attitude and her friends support. This girl just had a beautiful spirit
Hi Christina! Fellow Spoonie here :) love your videos
Another spoonie here too. It’s so good she has the support.
❤❤❤❤
My boyfriend was recently diagnosed with connective tissue disorder 😢im not sure what it means. Will he be okay?
I'm so sorry to hear about your condition as well. I can't imagine what that must be like.
She’s beautiful and looks much healthier than many children with this condition. Usually they are bound to wheelchairs. I can’t imagine going through this - you guys are so strong! She’s lucky to have a great family and their lucky to have such a strong, positive daughter.
She has a beautiful features, she reminds be a lot of gigi Hadid.
Ashly C honestly
Right, she actually quite beautiful
Omg yes!
more like bella hadid
Or bella
i can't even imagine the pain she has to go through on a daily basis 😭 she is so strong! god bless this angel 🙏🏾
This girl is so strong, I hope she can stay safe.
Wow.... we are horrible. Here’s this incredible young girl who is in pain 24/7 and so much so that she doesn’t even remember when she is not in pain. We like to think that loosing a finger nail or a boyfriend or a necklace is the end of the world for us. But this girl can be in so much pain and then still have a smile on her face ready to live her life the best way she can. She is an inspiration.
Real talk
Amen
FACTSSS
Yes I prsy for her 😭❤️❤️❤️
True ,but just because other people have bigger problems it doesn’t make ours any smaller
Such a beautiful sweet girl. She's so brave, I'm really glad she has a friend. I pray that she'll find a better treatment.
You'll pray to the god that you believe did that to her in the first place?
RM Hey, RM, I'm actually an agnostic. Perhaps the word I should have used is hope, however, the word pray is more powerful and it helps alot of people. So stop shaming believers. What ever gets you through the night.
RM I would pray for her.
she should totally be a model omg... shes so pretty and I'm sure it raise awareness for EB
Disorders like this make you realise that you really dont have it as bad as other people, and that they are alot stronger just for the simple fact of what these certain people go through every second of their life
Azz Blasta pv
My cousin has this and she passed away a week before her 16th birthday. This is making me really emotional just watching this and remembering my beautiful cousin molly
Sorry to hear about your cousin wishing you and your family all the best
Did Molly meet the shaytards (she was in one of their videos years ago)
i’m so sorry for your loss❤️
R.I.P molly
Sorry for your loss
Breanne Nunya bizness I am so sorry for your loss my uncle just committed suicide so I am so proud of her
just imagine the fact That she gets her periods too..that'll add even more pain..god bless her forever.♥
😢😢 another worst pain...😢
Weird thing to imagine, but alright
Summary of periods:
Uterus wants baby
Uterus doesn't get baby
UTERUS WANTS REVENGE
LuvCookiezz ive seen that before. not funny
She is so beautiful and that’s the only thing I see in her BEAUTY.
She is lucky.. She got good friends who keeps her happy
She’s not lucky I-
@@Katee2cool4uuu
Quite Lucky. Even when she is born diffrent, thats what makes her unique. And she has good friends and thats quite lucky
@@NarumiNazura no, she has skin that’s peeling off, that’s not lucky
@@Katee2cool4uuu
Well her skin isnt Lucky, its sorta a blessing. If you dont understand then i guess its too long to explain
@@Katee2cool4uuu she is not lucky with her skin, but she is lucky to have friends like them silly
She's still very pretty, you'd be lying If you think she isn't.
Well she isnt and im not lying just because she id different doesnt mean u have to lie about her features
no no weed bastard saying she’s ain’t pretty, idiotic mongoose
@@jbarbiie im not saying she is the ugliest person in tge world but would u marry her
no no Will you marry a girl just because of her beauty? shallow mind
@@duongvantien2388 u would take that into account but nowhere did i imply that
Omg I wanna hug her and be her friend rn. 😭❤️❤️❤️
Yeah but if u hug her her skin might fall off😢
You
Can't
Hug
Her
Tho
Night Shade omg sameeee 💗💗💗
Omega Fox why don’t you
Just be very careful!
She’s adorable, and deserves to be treated as the strong and wonderful human she is
Hold up-
Why she so fricking pretty?????
Literally came back to this comment 1 year later and I have 5.2k likes 😳 and for what? Thank y’all 🤧
Now it’s 5.7k likes 👁👄👁 (5/20/2020)
I know
Yesss
Jan Dejonghe lmao 😂 okay
I know she is soooooooooooooooooooooooo pretty!
Why shouldn't she be? Lol
Wait wha-
How is she so preety??
WE STAN BUTTERFLY QUEEN 💖💖
Bernice Ubochi Everyone is pretty dear. Why question HOW?
@@brunobucciarati6315 .k.
Especially you Bruno
Demons surround me every day and this girl is surrounded by angels and butterflies
She looks pretty in everyways.She is a beautiful butterfly
I'm glad she's making it through. That friend looks very genuine and kind and I'm glad someone didn't judge her for her condition.
i couldnt bare to finish the video, it hurts me just seeing her like that :*(
Edit: I had terrible eczema a huge part of my life. My skin would break and it would get infected into abcces. I've been able to control it now but I still have the scars. So I understand a little where's she's coming from, and it saddens me bc she will probably live her entire life with that disease while my eczema only robbed me of a few years. It isn't fair for her and god doesn't exist. Poor girl, I hope she's happy and doing well.
Yeah it made me feel helpless being unable to help in anyway...I hope they find something that can make her life more normal
Same, I barely made it to 3 minutes before I paused it. :( that was really hard to watch and it hurt so much...and here I am complaining about my moderate acne.
Same
rickiex but she wants you to notice and to not feel sorry for her but be empowered by her energy and strength. You can just simply ignore her and surround yourself in a comfort blanket but she’s still this way and needs to be seen and heard
Weak
She’s well spoken with a funny spirit and so sweet.
I like you.
Omg guys she is so freakin BEAUTIFUL
Daniela Ponciano She Looks Like An Angel!❤️
Do you write prettier than you probably
I AGREEEEEE SHE LOOKS SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO PRETTY😊😍😘
@@annettecook6329 Your rude shut up.
SLICK HEAD *you're
My friend got this,she was really unique,she little loved everyone and everyone really loved her,she was funny,and so kind,i went to her home alot we watch movies,but i knew that was having a terrible time i saw how much medicine she took,and how much she was suffering,she wasn’t with us in every activity,and her dream was to swim,but she couldn’t so I quit being swimmer ,and stoped going to the sport club for months so i can tell that it’s no necessary, I remembered when i was saying swimming is so hard and it makes your body so tired while you finish,oh my god i wws saying alot of cons about that sport and it was my favorite,after year i saw her back and her skin is almost rashes off ,she was bleeding more her skin became weaker she couldn’t move as she did very well,and here i was so sad seeing her like that I pretended that I didn’t notice anything different,and exactly after two months she had terrible in breathing as she was suffering from sm other things,she was hospitalized for a week and then she died ,i was so sad that my best friend ,the kind heart that I couldn’t find like is gone but at the same time felt really that she will finally rest from all that,she was suffering,and now she is calm and there is no suffer anymore,rest in peace,and i will alwayslove you mole♥️🤝
I'm very sorry for your loss... You're right though, she won't be in pain now. She's with you forever in spirit. ❤️
@@ayarriba9093 yeah ,thank you ayarriba❤️
Omg im so sorry R.I.P qnd bless you she's in good hands now but if it makes u feel better..... my grandma passed away during the pandemic and she was like my best friend i loved her soooo much and i miss her thats when my anxiety came in and i gained depression
@@ynriddle307 appreciate your words bro,so sorry for what happened to you,stay optimistic,and look forward 🤝♥️
@emeral pls no d in last PLS PLS PLS they are here some where♥️♥️♥️
My brother has epidermolysis bullosa, his names Xander and he’s 7 years old. Sohana looks like she has a more extreme case where as my brother has the mild condition. Just a few weeks ago people from the wish foundation came to grant him a wish. Everyday we fight for a cure, and everyday we spread awareness. Stay strong Sohana, we’ll be fighting for you too ❤️ visit www.ebxti.org/gallery if you’d like more information
Alyssa xo pin her comment❤️
Dezirae Cardenas12 I’ll pray for your brother, stay strong!
I hope your brother gets better and of course I'll pray for you Sohanna
It so sad to see that there are alot more people out there with this disease ill pray for your brother and stay strong❤❤❤❤
Not enough people have it for time to be spent on a cure. Sorry, but people don't care until it affects them or their family. As yours or this family wouldn't have. Not saying that's right, just that's how it is.
She’s a beautiful spirt.
Lol spirt
Milo-ballz101 LMAOOOOOO oops
Joanna Snedden just edit it to Spirit
I always get bully for being different😢
Whats heart breaking is that no one has found a cure for eb 🥺💔
Thank you so much for all your kind support !
In these difficult times we would be so grateful if you could share or even donate, to help fund life changing research 🦋✨
www.cure-eb.org/
www.justgiving.com/Cure-EB
I think no one wants to find the cure for rare illnesses because other options are easier and make more money. It's such a horrible and disgusting world we live in.
I've never felt luckier and more grateful for the life I've been blessed with! Now, SHE is an inspiration.
My best friend actually has this. But it's not as bad as her.
eDiT: If nobody belives me, i have proof go on my channel and find: "this is how u show your face!" the blondie is her. She lives a normal life as a normal gurl
Tell your friend shes strong and lucky 🥺❤
@@sastina6714 okie
PastelAri omg “okie” it’s serious lol
Tell your friend she is beautiful Spesial Meanful and she's blessed Just you two have a blessed day :love valicia!
You guys no that she is lying rite
I can't imagine what this little girls life is like, nor anyone else w/ her condition. My heart goes out to all of them. Rarely do you see an adult w/ this condition and if (that's a big IF) you do, they're in their early 20's.
A while back I watched a documentary about a boy roughly her age w/ this condition, his case looked far more severe than hers though (he was wheel chair bound, fused & missing his fingers & toes, next to no facial features - truthfully he looked like an unhealed burn victim from head to toe) and he was offered an experimental drug that would 'seal' or 'glue' his skin back together, preventing future wounds. He was understandably terrified, so he met up w/ another boy who had been on the treatment. I don't know whether he tried the drug but the boy he met up w/ had decent size patches of healed skin that successfully stayed together! He did say the treatment was excruciating and compared to their daily pain, it was the same but w/ a bonus of possibly never happening again.
I wouldn't wish this upon anyone. No one should spend their lives in this much pain, completely sheltered from a normal childhood, to not make it to adulthood. It sickens my heart.
😢😢😢I'm getting a little teared eyed over here that was so well put 😍😢😢
@@joepio1582 Thank you! My hope is they fix any bugs the experimental drug may have, then induce a coma like state for these children so they won't have to feel the pain of being stabbed and when they wake up, their healed. It only seems fair to me.
@@nanuq83 ya ikr
At the same time I'm very happy they're doing research and trying the experimental drug instead of just "oh this child's life would be miserable, let's just end it" like I've seen some ableist people say about children born with conditions. Everyone deserves to live in their own right, and I'm so happy that progress is being made for these strong and beautiful souls.
@@nanuq83 Yes, that would be absolutely wonderful!
my heart hurts. like really, i hope she'll get better
Just wow. No one in this world deserves to endure this kind of pain everyday... especially someone with a kind a gentle soul like hers! 💔
Thank you so much for all your kind support !
In these difficult times we would be so grateful if you could share or even donate, to help fund life changing research 🦋✨
www.cure-eb.org/
www.justgiving.com/Cure-EB
All those dislikes are the ppl who have no heart , god bless this girl bc shes fighting thru her pain :(
Grammer
Maybe they flipped their screen to like it again.
And then there's the beauty community that freaks out over a pimple...
Jennies face tho (she's so cute)
I don’t really like comments like these. What this girl has is a serious condition, and people understand that. Some people have pimples, which they don’t enjoy having, and even though this girl has it worse, you are allowed to want a pimple to go away.
humans. obbssed over beauty. its patheticccccc really it is. looks fade over time
@@joeyweston9001 try have severe acne for a year and see how hard it is
@@magpie6376 well arent you beautiful the way you are
It makes me sad to think that there are people who go through this horrible situation ... I feel bad for her, but she (and thousands of others) are very strong, because they have been able to live this way for so long. I hope someday people will be able to heal themselves from all diseases.
RESPECT
These are the Real Super Heros of reality
How so? Who did she save?
@@mdkgod43 who said super heros had to save anyone? They could just be beacons of hope or inspirational figures
Damn she’s beautiful hope you get better Sohana
1000 subs with no vids that’s not how it works
1000 subs with no vids you can’t get better from a disease that has no cure. Sadly, that’s not the case
She’s struggling with pain everyday and I’m here complaining about a pimple lol
And me abput my sis
ur allowed to complain!! there will always be someone dealing with something worse than you, it doesnt mean your pain is irrelevant :)
B ^^ this reply yesss correct!
Same
I complaining about my parents and brothers :D
I feel like they love my bro more then me.
My family treat me and my bro diffrently :
My friend has this, i wish this disease would somehow disappear aswell as others! The pain these people go through is awful. Praying for them 🙏🏼
I will be praying 🙏🏼
She is really beautiful and she’s a fighter.
I remember the brave young man who had this. Honestly, I couldn't even imagine. Sending prayers your way.
I pray they fund a cure. She and anyone else suffering, deserves a normal skin. I admire her resilience, and her mother's dedication. And, she has the coolest friends ever!
I heard somewhere that there is cure but it has high death rate.
And just think when we complain about the most minute things. Yet she keeps on going like a boss. This child is a warrior!!!
She is adorable and pretty like a butterfly 🦋❤️
Sensitive and soft too
Thank you so much for all your kind support !
In these difficult times we would be so grateful if you could share or even donate, to help fund life changing research 🦋✨
www.cure-eb.org/
www.justgiving.com/Cure-EB
My fav emoji is the butterfly 🦋
This broke my heart
I hope in the future she will be cured fully and can just live a normal life and be happy
Be thankful for the ones that are born normal
i agree with u, btw hi stay!!!!
I’m never complaining again 😖
royal diamond Everyone has their own problems, ofcourse, her condition is very severe, but your problems are also really important as well.
Aly Y. True but all of my problems are nothing compared to this
royal diamond I get that, my problems are not at all as bad as hers are, and I truly hope she gets better as the years progress.
“I can’t remember a time with nothing hurting” ....... that makes me wanna cry..
Poor girl 😢😢😢😢 She's a beautiful angel on the earth God bless you 😇😇
Positive vibes to you Sohana. My name is Destiny and also was born with EB (rdeb) and we definitely need more funding for research. Hoping some day we will have a cure
@Heidi Willard aww Thank you 💛
Hey There! First I wanna tell u r so cute, just checked out your channel, Amazing! I just wann'it to help u about ur condition! In this comment section, I found a comment about a cure! Do check out that com.
She’s amazing, I’m glad she was comfortable enough to share her story.
I'm so glad that she has friends arounds her , she's a sweet girl and so brave I can't imagine the pain she goes through , bless her, such a lovely beautiful butterfly.
God didn't give her something everyone has, she's unique, but instead god blessed her with amazing friends and parents
@полночь he may have gave her pain but she is a great inspiration for young adults
@полночь there’s a reason god did everything athiest
@@imnotfromthisworld5054 I was about to comment it but you did so thank you xD
@@imnotfromthisworld5054 no but he chooses not to "bless" her by taking away her constant pain...
@@imnotfromthisworld5054 he certainly isn't giving her any relief
I didn't see any butterfly skin only beauty and a shining glow
GrandMaster123 man I wish the boys I knew were this freaking nice 😂
@@lilygreen4186 tell the boys you know to be nice if someone from the internet AKA me will come set them straight for you
Butterflies are beautiful too though
It’s amazing how I complain about so much stuff, but people with issues they can’t fix they can find a way to be happy!💓
Imagine how it hurts her mother every morning she was worried everytime may god heals her soon 🥺
She might have butterfly skin but her heart is made of happiness
If I could have any type of power in the world i would want to sacrifice it at the cost of atleast being able to heal or atleast help people like her.
Correct