The Teenager With Butterfly Skin | BORN DIFFERENT

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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.org/cure-eb/
Video Credits:
Videographer / director: Bahareh Hosseini
Producer: Nathalie Bonney, Ruby Coote
Editor: Thom Johnson
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[@dragon-like-tendencies9519]

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.

[@eshasaigol3456]

And she still stayed strong....Your right by all ur exact words🤗

[@good-xv8cp]

500th like!

[@dragon-like-tendencies9519]

@@good-xv8cp holy heck. I just wanted to give this girl a hug. I hope she can see we’re all rooting for her

[@good-xv8cp]

@@dragon-like-tendencies9519 Yeah, she deserves better honestly.

[@xx_somescenecath0lic_xx888]

amen

[@curiousdogmom7615]

She is so pretty. She actually looks like little Gigi Hadid..

[@swardhuni]

i was going to comment the same thing..... She is beautiful anyways

[@kiaraandrew1029]

Yeah really she is❤🥺🙈

[@sooah54]

I commented this a long ago I can't find it lmao🤣🤣

[@zarawho]

True, gigi is as cute as her

[@nace2001]

This is what i'm thinking too, she's beautiful..

[@ninablack1954]

"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 💔💔🙏

[@Siyanaaaaaaa]

Yeah :c

[@ninacate9158]

ikr.... and also hii other Nina! i’m a Nina too!

[@Albanian_History]

@@ninacate9158 NINA NINA NINA “said by the fish girl” 🐟 👧

[@rakshitasingh6574]

Yesss .. It's so Painful to watch herr

[@Charrrllss]

For about a week I needed to do that,it hurt so much, I can’t imagine doing it every day!

[@robloxroxplayz6667]

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 😊

[@tofu.x8428]

Yeseee

[@spongebobsquarepants619]

I don’t want to ruin the moment buuuuuut😅 That’s not true Butterflies can see their wings

[@randomenough4243]

@@spongebobsquarepants619 too bad you ruined it anyway

[@foxy_lockzy5378]

*SNIFF* AGREED!

[@foxy_lockzy5378]

@@spongebobsquarepants619 well that…

[@hermionesethalfaro8088]

"But i dont really remember a time when there was actually nothing hurting" damn :((((

[@dontmindme.imjustafraidofe9327]

Fggg

[@joannasanchez7084]

Yes that broke my heart

[@Guineapig-yo6fi]

Ikr D:

[@maisieellis3862]

That was the saddest part

[@thunderthumbs697]

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.

[@poutingpanda5486]

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...

[@bunnymike9546]

Yeah, I really hope nothing bad happens to her and her family.

[@SRBOMBONICA86]

You get used to it eventually

[@mayasudac6232]

🖤

[@neilasalazar3143]

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❤️

[@madezra64]

And she has to spend hours every morning and night wrapping her wounds :(

[@mimi9144]

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 💕

[@cal4kk345]

Fly high angel 🙏

[@bxrryggukk]

Angel 🥺🥺🥺

[@CaidenGamez]

😪

[@yousef4330]

I’m so sorry to hear that! At least now he can rest peacefully :(

[@starryeuphoria1105]

@@CaidenGamez what the frick

[@hayleykong4794]

That must've hurt a lot. Hope her pain will not be as painful as she grows.

[@merakimate6188]

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

[@sano8172]

@@merakimate6188 i hope the best for you

[@help5344]

@@merakimate6188 hope the best for you!!! ❤❤❤❤

[@johnpotatogaminggr900]

@@merakimate6188 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

[@johnpotatogaminggr900]

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

[@islarobinson9370]

I've met her Her twin sisters are my close friends She's so kind and so pretty

[@fairytailnalugachachannel6050]

On what occasion? Like I get it you pet through her twin sisters. But when? Like at a sleep over?

[@islarobinson9370]

@Shayla Bailey yeah I will next time I see them

[@putririandoyo302]

Omg so cool!!

[@Flowerysoobin]

Sureeeeeeeee

[@Flowerysoobin]

Actually. I believe you but were you in the video or not?

[@believerbyheart3501]

You guys see her , how strong she is and then you complain about having pimples

[@yuckfou7085]

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.

[@believerbyheart3501]

@@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 .

[@bbg.ttiiannaaa2730]

* Dolan * don’t ever compare something as small as ᴬᶜᴺᴱ to this.

[@yuckfou7085]

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.

[@yuckfou7085]

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.

[@jordyngardner8361]

how are people scared of her she is so pretty! i would do anything to be her friend

[@Itijain]

Awww that's so nice of you and BTW me too cuz she is SOOO pretty and kind♥♥ she looks like a beautiful princess

[@aflower6955]

By the way who wouldn't be friends with duplicate of Gigi Hadid

[@Itijain]

@@mimib5151 when did I said that looks matter?! I just said that she is pretty and beautiful -_-

[@ariella2828]

I KNOW RIGHT

[@kristynguyen3990]

I really wanna be her friend too!!!

[@Ash33775]

she is not crying but why do i feel like she is crying the whole time

[@ultimategod542]

It’s the liquid that oozes out of the skin, I have gone through this, now it’s only between my nose and lips

[@BlueifyAutism]

@@ultimategod542 yikes

[@bonkchoy6881]

You're right actually

[@sIeepiikat]

*Yet she is still one of the most adorable people I’ve ever seen*

[@messiahhh]

Yes

[@hynagomez8133]

Same

[@Lil_7772]

Yes

[@Lil_7772]

She sound so cute

[@tsuyuasui1579]

She be so damn cute and whoever thinks otherwise I'mma socially backhand them across the face-

[@heyitstawane8773]

She suffer just to be alive And us, these days complaining but our beauty For me she’s 🦋 Butterfly queen 🦋

[@NoName-fy9rz]

@Goddess Asuna hahaha

[@charlesedwards6453]

A reference to FIRST?

[@sparechannel1166]

Synthesis 30 Ikr lmao

[@kittygirl2585]

Synthesis 30 periodt

[@arielgivan834]

Synthesis 30 hello grammar police!!!

[@cedricradloff8152]

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.

[@Imnotsurewhatthisis324]

not tryna say ur wrong but she sounds pretty sad to me

[@CureEB]

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

[@bonkchoy6881]

She is SO STRONG

[@bonkchoy6881]

@@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

[@lunalunes7221]

“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

[@CureEB]

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

[@im_a11..]

@@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!

[@hoho5303]

Her face ,She’s look like gigi hadid ,she’s pretty

[@chem4882]

I noticed that too 💜

[@laballzee9090]

Truely

[@coochiemama]

I thought the same too

[@mademoisellegala]

And a little bit of Bjork too

[@skinnygeisha]

Anyelina Barboza oo

[@briannamoore9306]

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

[@kallyeeckhart3914]

Brianna Moore-Cobb YAS U R A LEGEND U DESERVE THE MOM OF THE YEAR AWARD SHE IS A TRUE MUM!!!!!!

[@crtsjoan1985]

yes she does deserve MOM OF THE YEAR 😣💙

[@afreenhameed4284]

Right ✔️

[@claredavies21]

ᗪEᖴIᑎITEᒪY ♥️♥️♥️

[@jazzncaffeine]

it's from 2 years ago I wonder how she's doing now

[@cal4kk345]

pray that she is doing fine 🙏

[@telishabongeba2805]

Xpadilidochus mhm God protect her 🙏🏽😞🥺✨

[@telishabongeba2805]

@Noa Glaser omg cool

[@laalll3231]

@Noa Glaser how is she?

[@ri3lyx220]

shes 19 now

[@aesthetic8653]

When she said “I don’t remember a time I was not hurting” it broke my heart Shoto out.

[@ARMY-kh8ji]

Same...

[@callmehmochi5497]

Same

[@maricruzavila2747]

Right 🥺

[@samanthaamarathunga]

@@maricruzavila2747 hi! Todoroki!

[@noxsolarium4611]

Yeah

[@bluebriee_]

Those 425 people who disliked must of been crying so hard they couldn’t tell the difference between the like and dislike

[@tamikabarr6732]

They don't like what she's going through

[@Stereo6400]

Jessica._. Whiting maybe they just don’t like the fact that this has been documented as, well, entertainment. That’s taking it to the farthest extent possible, but anyway, I see where they might be coming from.

[@emilyroseregan9326]

Its 505 now :(

[@warshanabaldew]

Smol Potato2.0 make it 538 dislike’s

[@kenya1301]

Why would they be crying?

[@maple9297]

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😘😇

[@minhaaa7222]

I hope she's better now, it's 2019 😔💜

[@crtsjoan1985]

ikr😇💜

[@ayano4876]

She is betuiful just the way she is

[@wickywuth6976]

Pharmacy doesn't cure you,They rob you,But I hope she could be cure

[@catfacethemole9551]

No praying won't work

[@analyamaya453]

Whats heart breaking is that no one has found a cure for eb 🥺💔

[@CureEB]

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

[@liviemillie6455]

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.

[@kaliyaberg9993]

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.

[@EmilyHummingbird]

She's so pretty and she has a beautiful soul. God bless her and everyone in her life.

[@XvCiiA]

You annoy me.

[@roseyleatupue5309]

@@XvCiiA why does it annoy u lol????

[@fluffypuppers8515]

XvCiiA Your existence annoys me.

[@Nikol-sg9ly]

@@XvCiiA omg you are breathing that is so annoying 😵😊

[@mariamurphy3653]

Bloody hell people no need to get angry at each other😑😁🇮🇪🥊🙂🎸

[@urmum6235]

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.

[@urmum6235]

@Claire Collins not telling u lol internet safety

[@urmum6235]

But it's not in america

[@tyrashah4694]

Sw Wong nO, just like if you live in what country not like your whole exact address

[@ilovebtsandarmy8264]

Really I think you are lying 😂😜

[@Lily-kk2tu]

@@ilovebtsandarmy8264 ikr

[@tozakiivy]

i can't even imagine the pain she has to go through on a daily basis 😭 she is so strong! god bless this angel 🙏🏾

[@fyoui3593]

My mom once said "What makes you special is being You and being Different"

[@seyiselaton]

I wish my mom told me that

[@thansingbisne8827]

@@seyiselaton oh dear❤️❤️❤️

[@seyiselaton]

@@thansingbisne8827 🥺💞

[@maddievedder4926]

No joke, she’s pretty pretty OMG!! Thnx for the likes. Btw I don’t just say stuff for likes, I truly mean it... 💜

[@claire28638]

Maddie Vedder ikr

[@dallaivishesh7416]

Yes 💙

[@omgshefish8118]

Um ew no her personality is nice but other then that😝

[@iiomq_wolffii5999]

@@omgshefish8118 did you just call her ugly cause she looks normal to me

[@nikktings6007]

I was honna comment the same thing shea really pretty

[@jingai7155]

She's pretty the way she is. She is unique in every way. She is strong in her own way!

[@jamieheggie5124]

You are right everyone is unique in their own way!

[@mrsalicewilliams9978]

Yea everyone is strong and pretty and unique in there one way

[@chaneldiary7776]

100%

[@roguejester4986]

Her beauty is inside and out. Making her extraordinary.

[@nettiespaghetti4401]

she should totally be a model omg... shes so pretty and I'm sure it raise awareness for EB

[@roseisrose1276]

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♥️🤝

[@ayarriba9093]

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. ❤️

[@roseisrose1276]

@@ayarriba9093 yeah ,thank you ayarriba❤️

[@ynriddle307]

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

[@roseisrose1276]

@@ynriddle307 appreciate your words bro,so sorry for what happened to you,stay optimistic,and look forward 🤝♥️

[@roseisrose1276]

@emeral pls no d in last PLS PLS PLS they are here some where♥️♥️♥️

[@potatoarmy5312]

In my opinion she’s actually really pretty I was so distracted by how pretty she was I forgot she had butterfly skin☺️

[@ashleyguajardo4547]

@Takeshi Bennett omg😭😭 when did she pass??

[@potatoarmy5312]

frostbeat_, your rude

[@kr250]

Takeshi Bennett ??????????????

[@vucedy2223]

Takeshi Bennett wait what?? She’s dead omg poor girl ):

[@nothing-zd3ol]

Mo Mo EXACTLY RIGHT THATS WHAT I WAS THINKING

[@avamayfield6648]

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 ❤️

[@sardine56]

Hi. This comment really upsets me,

[@danganronpaweeb7949]

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

[@7Lace77]

Really?

[@martinezmarisol]

That happened to me too ava doos

[@sorayasing3717]

Me too.. ive puckles on my face and i complain..but seein this video.. omg Never complain

[@isabellab1821]

She is so beautiful and that’s the only thing I see in her BEAUTY.

[@rayf3313]

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.

[@geezlouise9658]

Wish I could make her pain go away

[@leonardofuentes2592]

Geez Louise well I can’t so deal with it

[@gothamneeedsme]

Geez Louise preach it

[@dum5460]

You're a very kind and generous person!

[@sheushsh7]

I thought ur profile pic is Ryan Ross..-

[@thequeenthatsme1302]

Can i help please 😊

[@LovinBeingNatural]

I’ve noticed that most people born differently are always so incredibly brave while battling through their conditions. So admirable 🙌🏽

[@josephharkness7957]

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.

[@reed2841]

Joman101 exactly I have asthma too and people think it's a severe condition when all you need is an inhaler.

[@DarkZerol]

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.

[@jno805]

LovinBeingNatural people don't make as many documentaries about the people with illnesses that don't act brave

[@hughjass5125]

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.

[@seleneklarelee930]

She is actually so pretty inside and out and its sad that she had to suffer like that everyday...

[@seapinecone2869]

She’s adorable, and deserves to be treated as the strong and wonderful human she is

[@jinwoo5098]

Imagine having that condition and have to worry about your period

[@kimanpangirl2117]

Armyyyyyyy

[@arielgivan834]

....I would just cry. She is so strong...

[@khholious]

Ouch..

[@bean9291]

jimin.jpeg uwu omg 😱 that would be the worst

[@alyssabeth6177]

K X not always, I’ve done the pill and shot and still got it

[@cellucity7503]

She's beautiful. No matter how she looks. She looks like a girl from another universe.

[@chole4615]

That’s rude..she IS a beautiful girl from HEAVEN

[@bloosomteehee3363]

I feel like she is trying to say it in a positive way but when she commented it sounded negative

[@billyren5211]

@Nugget The leopard gecko 🤣

[@allison.marie712]

she's literally prettier than me!

[@attaasamoahsnr9255]

@Nugget The leopard gecko your an alien too

[@NzPhenomenon]

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! 💔

[@CureEB]

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

[@venus.2222]

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 🙏🏼

[@jillgooding4926]

I will be praying 🙏🏼

[@dannyv-cq2lm]

She's still very pretty, you'd be lying If you think she isn't.

[@nono-xw9qi]

Well she isnt and im not lying just because she id different doesnt mean u have to lie about her features

[@jbarbiie]

no no weed bastard saying she’s ain’t pretty, idiotic mongoose

[@nono-xw9qi]

@@jbarbiie im not saying she is the ugliest person in tge world but would u marry her

[@duongvantien2388]

no no Will you marry a girl just because of her beauty? shallow mind

[@nono-xw9qi]

@@duongvantien2388 u would take that into account but nowhere did i imply that

[@kayliehoane7793]

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.

[@melanie.vallejo]

Kayyy May God bless her. What a strong girl ❤️

[@savssss]

I want u to tell that girl shes a legend for dealing with that god bless these people

[@slide6110]

God bless send her lots of love from Lucinkle❤️❤️❤️

[@kayliehoane7793]

Lucinkle thank you :)

[@kuuipobaby1]

I hope that you are good friends with the girl in your first period class, I’m sure she is very nice

[@missmusicana9128]

I've never felt luckier and more grateful for the life I've been blessed with! Now, SHE is an inspiration.

[@JustJenReacts]

And just think when we complain about the most minute things. Yet she keeps on going like a boss. This child is a warrior!!!

[@lynne99]

She has a beautiful features, she reminds be a lot of gigi Hadid.

[@jasmineeasmr]

Ashly C honestly

[@rosie3747]

Right, she actually quite beautiful

[@Lovethingsbeautyxoxo]

Omg yes!

[@dantedesilva2977]

more like bella hadid

[@viktordelrey2824]

Or bella

[@piggyperfection2514]

I feel so bad for her but she's gorgeous

[@MintieTwinzgaming]

I feel bad for her too but she's not pretty or gorgeous.. but her personality is awesome

[@iwashere143]

she is very pretty, and I feel bad for those of you who can’t see it

[@MintieTwinzgaming]

I Was Here I feel bad for those who are blind and lying about her looks

[@emmadrinksbleach3246]

frostbeat_ go to hell

[@sophiefraser3995]

100th like I agree

[@veramelnik7938]

No she's not the same mentally, she's more mature and carries herself better than most of us. People like me who get depressed we don't have a job and she can laugh even with her skin peeling off every day.

[@pearlgrace42100]

Imagine how it hurts her mother every morning she was worried everytime may god heals her soon 🥺

[@fireflymiesumae]

I like how cool she is with her condition and not self loathing.

[@weg5856]

The mother is very dedicated, 1.5 hrs every morning.

[@kelsey5440]

Ikr, god bless!

[@pragyaaaaaa____]

Yeah cos she is a mom❤

[@pragyaaaaaa____]

@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

[@bellaallen9342]

It’s her child, she is happy to spend that hour and a half with her.

[@readyfence7982]

SHE HAS TO. And I respect her for that

[@floraheheh]

“I can’t remember a time with nothing hurting” ....... that makes me wanna cry..

[@greycloud8057]

I admire all of these people for telling their stories. I love to see how other people live and how they over come challenges. Truly amazing.

[@katekillick1353]

The fact that people have the nerve to dislike this video is just so rude

[@aflower6955]

Their aim is to dislike every video they see, even if it's death of their mother or close friends..

[@yaomeii]

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...

[@heaven_x810]

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!!!

[@kristinowens899]

*Angel

[@riri.online]

Yes, she’s acute angle 😉

[@kirysmi6999]

She is a cute angle ooohh😍😍

[@heaven_x810]

@Kristin Owens sorry I just get mixed up 😂😂

[@itz_emlyy949]

Angle?

[@izyltex]

“I don’t remember a time I was not hurting” i cant imagine how bad that would feel

[@CureEB]

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

[@izyltex]

@@CureEB I cannot donate but i can pray and hope things get better!

[@rottierumbles9451]

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.

[@AffordBindEquipment]

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!

[@sashablessed9333]

That's what I was thinking too. I have scoliosis and also VERY supportive parents.

[@iadoresleep]

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)

[@ghostlymittens3498]

I know

[@aquabitxh9770]

Yesss

[@iadoresleep]

Jan Dejonghe lmao 😂 okay

[@jsdee]

I know she is soooooooooooooooooooooooo pretty!

[@mrsbomsta]

Why shouldn't she be? Lol

[@LeviAckerman-wf4ct]

Shes so strong. I couldn't survive through this just because of the tremendous mental strain and depression that must come with this disease.

[@eightree_8318]

i'm so happy with the mom's support like i'm so happy that she really tries for her and try to find a way to end it but if this girl had a healthy body, i think nothing could stop her, if even with her conditions, nothing stops her

[@HeyItzRosie]

She’s struggling with pain everyday and I’m here complaining about a pimple lol

[@-_vee_-7349]

And me abput my sis

[@sleepcrs]

ur allowed to complain!! there will always be someone dealing with something worse than you, it doesnt mean your pain is irrelevant :)

[@kokobeans6907]

B ^^ this reply yesss correct!

[@rileysharpe5215]

Same

[@arishana1106]

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 :

[@lala1028]

The fact that she looks similar to the little Gigi Hadid 😊 what a strong young girl !

[@aflower6955]

I was thinking that too, I wish that there will be cure invented for this someday.

[@rakshitasingh6574]

Ikrrrr .. Ikrrrrr !! No lie

[@ryubiekay5337]

Eye to eye!

[@inseperablekoomi]

i was thinking thinking that too omg

[@CureEB]

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

[@popsgizbaldock9260]

People don’t understand how lucky they are to be born without a decease or disability because people who do have some or one could go through so much in a small amount of time

[@Ari-tr7vr]

“It’s normal for me to wake up with quite a lot of blood on my pillow” :(

[@gabrielaortizhernan899]

Why?

[@blackbarbie4777]

@@gabrielaortizhernan899 because her skin rubs off and causes blood loss

[@gabrielaortizhernan899]

@@blackbarbie4777Ohh I understand

[@ameliaxshepherdess8818]

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

[@sastina6714]

Tell your friend shes strong and lucky 🥺❤

[@ameliaxshepherdess8818]

@@sastina6714 okie

[@heartsfromsunshine]

PastelAri omg “okie” it’s serious lol

[@marshmellowgamer6880]

Tell your friend she is beautiful Spesial Meanful and she's blessed Just you two have a blessed day :love valicia!

[@tonyrowe2526]

You guys no that she is lying rite

[@ayushichowdhury9850]

just imagine the fact That she gets her periods too..that'll add even more pain..god bless her forever.♥

[@himasha3234]

😢😢 another worst pain...😢

[@derek3418]

Weird thing to imagine, but alright

[@luvcookiezz3945]

Summary of periods: Uterus wants baby Uterus doesn't get baby UTERUS WANTS REVENGE

[@hayleyy_.j]

LuvCookiezz ive seen that before. not funny

[@ceydayorulmaz1642]

This is why I'm so grateful that I'm a healthy being. She is so strong and brave and honestly all I can say is WOW. She has shown nothing but a happy teenager to us all. Despite all the limits caused by her condition, she still has that heart warming smile on her face. She melted my heart and I hope she carries that smile with her forever everywhere she goes.

[@ndiiy]

"She have good resilience.. she focusing what she can do, not what she can't do" 😊🌻✨ bless you and your family! Have a great and wonderful life ✨

[@OopsExposed]

*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 💙*

[@j6nna]

Yikes! Sorry your pfp ❤️❤️

[@AzzBlasta]

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

[@morganfritts4408]

Azz Blasta pv

[@mahi-yd8bq]

" I may be different for people but mentally I am probably the same " quite right , she seems enough of pain and now wants to win over her pain 😌

[@sarahmahmood6236]

I like how cool and open she being towards her situation because many people would be ashamed or embarrassed by the situation but she's so open about it that's what I love.

[@bubu-jx6zc]

She is lucky.. She got good friends who keeps her happy

[@Katee2cool4uuu]

She’s not lucky I-

[@NarumiNazura]

@@Katee2cool4uuu Quite Lucky. Even when she is born diffrent, thats what makes her unique. And she has good friends and thats quite lucky

[@Katee2cool4uuu]

@@NarumiNazura no, she has skin that’s peeling off, that’s not lucky

[@NarumiNazura]

@@Katee2cool4uuu Well her skin isnt Lucky, its sorta a blessing. If you dont understand then i guess its too long to explain

[@tofu.x8428]

@@Katee2cool4uuu she is not lucky with her skin, but she is lucky to have friends like them silly

[@joannasnedden]

She’s a beautiful spirt.

[@Nita.C.Yorack]

Lol spirt

[@joannasnedden]

Milo-ballz101 LMAOOOOOO oops

[@wraithess]

Joanna Snedden just edit it to Spirit

[@martinezmarisol]

I always get bully for being different😢

[@MALIBU1959]

True beauty doesn't need to come with pretty looks only in heart

[@ambie2673]

In this situation that doesn’t matter. Because she beautiful inside and out.

[@tessadoyle1]

she is so brave and courageous, it’s incredible to me that even through the hardship, she still goes on with her life. a true idol for me

[@ellabeans2165]

And then there's the beauty community that freaks out over a pimple...

[@firstnamelastname6191]

Jennies face tho (she's so cute)

[@strftlrd8797]

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.

[@joeyweston9001]

humans. obbssed over beauty. its patheticccccc really it is. looks fade over time

[@magpie6376]

@@joeyweston9001 try have severe acne for a year and see how hard it is

[@thiscommentgoestoabout4721]

@@magpie6376 well arent you beautiful the way you are

[@breannetaylor1691]

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

[@tamikabarr6732]

Sorry to hear about your cousin wishing you and your family all the best

[@imjustnae3299]

Did Molly meet the shaytards (she was in one of their videos years ago)

[@Lauren-uv8nc]

i’m so sorry for your loss❤️

[@lauralteif7333]

R.I.P molly Sorry for your loss

[@elysesummers2889]

Breanne Nunya bizness I am so sorry for your loss my uncle just committed suicide so I am so proud of her

[@Nanatomie]

She’s lucky that she is able to live for so long. She is a legend, a beauty, and amazing. No matter what happens she will be strong.

[@puffbaraddict8756]

Lucky!???!? I wish i was dead and i sure she does as well

[@arijordnnn]

my heart breaks for her but also her mom.. i can’t imagine watching my son go through something like this, she seems so patient and loving

[@christinadoherty3212]

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

[@rainbowspoonie]

Hi Christina! Fellow Spoonie here :) love your videos

[@certaindeathawaits]

Another spoonie here too. It’s so good she has the support.

[@lolapascual916]

❤❤❤❤

[@Demi.d3mi]

My boyfriend was recently diagnosed with connective tissue disorder 😢im not sure what it means. Will he be okay?

[@blurryphan7578]

I'm so sorry to hear about your condition as well. I can't imagine what that must be like.

[@avalondreaming1433]

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.

[@heavybizness]

You'll pray to the god that you believe did that to her in the first place?

[@avalondreaming1433]

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.

[@drkp4nku553]

RM I would pray for her.

[@anonymous17181]

I am a 15 y/o girl with a cleft palate and cleft lip, and I actually got bullied at my school when I was in 9th grade (I'm in 10th now), the bullies would discriminate me everytime about my looks, and all so at that time I was very depressed, which affected my grades, my connection with my friends, and which even lead me to anxiety.. (well ngl but I still have anxiety) but I feel much better now because of my friends and this isolation, because then I won't have to see my bullies.. now that I have seen Sohana, I feel like Sohana is such an inspiration to me because despite of having butterfly skin she is still enjoying her life, and she focuses on what she can do neither than what she can't do. I'm so proud of Sohana, she is so inspirational! Keep it up Sohana, we can do it!! 💕💜

[@leahscheeff7493]

🥺🥺 my heart breaks for this girl. I just wanna hug her

[@Izzywasherewithhercookies]

This girl is so strong, I hope she can stay safe.

[@emmaloyd3328]

Omg I wanna hug her and be her friend rn. 😭❤️❤️❤️

[@daleyapper3817]

Yeah but if u hug her her skin might fall off😢

[@madisonthelilpotato.-.2756]

You Can't Hug Her Tho

[@ingajurkaite2983]

Night Shade omg sameeee 💗💗💗

[@raspberry_coke_float8697]

Omega Fox why don’t you

[@joyawelle4868]

Just be very careful!

[@kodda7935]

She is so strong. So pretty. And so intelligent. She makes me to want to get stronger too and not to give up.

[@Lee-ys2ts]

Can not imagine what she is going through physically and mentally....bless her for being so strong

[@clvudii1386]

Wait wha- How is she so preety?? WE STAN BUTTERFLY QUEEN 💖💖

[@brunobucciarati6315]

Bernice Ubochi Everyone is pretty dear. Why question HOW?

[@clvudii1386]

@@brunobucciarati6315 .k.

[@huup5959]

Especially you Bruno

[@lu-ls4tb]

Demons surround me every day and this girl is surrounded by angels and butterflies

[@zacharysavage3286]

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.

[@tamikabarr6732]

Real talk

[@jennytran6530]

Amen

[@itsunshineee]

FACTSSS

[@ajetta2669]

Yes I prsy for her 😭❤️❤️❤️

[@annaevelyn7579]

True ,but just because other people have bigger problems it doesn’t make ours any smaller

[@cloudzapphire7566]

This was so hard to watch. It's like she's being tortured every second :(

[@emmasnow2335]

she's so beautiful and inspirational. i truly do admire her resilience!

[@anithahelvi5048]

I can't begin to imagine how painful that must be.

[@hughjass5125]

Anitha Helvi it’s horrible. No person should have to live with it😔

[@Sariine436]

@@hughjass5125 True. Life isint fair!

[@oliverordonez3061]

She looks pretty in everyways.She is a beautiful butterfly

[@Mary_Lee2395]

This truly breaks my heart and brings tears to my eyes. She such a beautiful and strong girl being able to endure all this pain and go about her day ❤️ may god bless her and find a cure for her!

[@KSun-yq1yp]

She’s so courageous and absolutely brilliant! We’re all rooting for you Sohana! ❤