The Teenager With Butterfly Skin | BORN DIFFERENT

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  • Опубликовано: 1 окт 2018
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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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Комментарии • 8 тыс.

  • @dragon-like-tendencies9519
    @dragon-like-tendencies9519 3 года назад +13271

    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
      @eshasaigol3456 3 года назад +143

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

    • @good-xv8cp
      @good-xv8cp 3 года назад +23

      500th like!

    • @dragon-like-tendencies9519
      @dragon-like-tendencies9519 3 года назад +39

      @@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
      @good-xv8cp 3 года назад +25

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

    • @xx_somescenecath0lic_xx888
      @xx_somescenecath0lic_xx888 3 года назад +7

      amen

  • @curiousdogmom7615
    @curiousdogmom7615 4 года назад +7156

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

    • @swardhuni
      @swardhuni 4 года назад +155

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

    • @kiaraandrew1029
      @kiaraandrew1029 4 года назад +62

      Yeah really she is❤🥺🙈

    • @sooah54
      @sooah54 4 года назад +33

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

    • @yeonjun794
      @yeonjun794 4 года назад +26

      True, gigi is as cute as her

    • @nace2001
      @nace2001 4 года назад +14

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

  • @ninablack1954
    @ninablack1954 3 года назад +7246

    "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
      @Siyanaaaaaaa 3 года назад +11

      Yeah :c

    • @ninacate9158
      @ninacate9158 3 года назад +9

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

    • @Albanian_History
      @Albanian_History 3 года назад +24

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

    • @rakshitasingh6574
      @rakshitasingh6574 3 года назад +7

      Yesss .. It's so Painful to watch herr

    • @Charrrllss
      @Charrrllss 3 года назад +3

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

  • @robloxroxplayz6667
    @robloxroxplayz6667 3 года назад +6674

    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
      @tofu.x8428 3 года назад +22

      Yeseee

    • @spongebobsquarepants619
      @spongebobsquarepants619 3 года назад +176

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

    • @randomenough4243
      @randomenough4243 3 года назад +173

      @@spongebobsquarepants619 too bad you ruined it anyway

    • @foxy_lockzy5378
      @foxy_lockzy5378 3 года назад +13

      *SNIFF* AGREED!

    • @foxy_lockzy5378
      @foxy_lockzy5378 3 года назад +10

      @@spongebobsquarepants619 well that…

  • @hermionesethalfaro8088
    @hermionesethalfaro8088 4 года назад +7518

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

    • @dontmindme.imjustafraidofe9327
      @dontmindme.imjustafraidofe9327 3 года назад +11

      Fggg

    • @joannasanchez7084
      @joannasanchez7084 3 года назад +66

      Yes that broke my heart

    • @Guineapig-yo6fi
      @Guineapig-yo6fi 3 года назад +6

      Ikr D:

    • @maisieellis3862
      @maisieellis3862 3 года назад +13

      That was the saddest part

    • @thunderthumbs697
      @thunderthumbs697 3 года назад +6

      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
    @poutingpanda5486 4 года назад +6377

    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
      @bunnymike9546 4 года назад +96

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

    • @SRBOMBONICA86
      @SRBOMBONICA86 3 года назад +14

      You get used to it eventually

    • @mayasudac6232
      @mayasudac6232 3 года назад +4

      🖤

    • @neilasalazar3143
      @neilasalazar3143 3 года назад +28

      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
      @madezra64 3 года назад +8

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

  • @aesthetic8653
    @aesthetic8653 3 года назад +5008

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

  • @hayleykong4794
    @hayleykong4794 3 года назад +3665

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

    • @merakimate6188
      @merakimate6188 3 года назад +166

      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
      @sano8172 3 года назад +44

      @@merakimate6188 i hope the best for you

    • @help5344
      @help5344 3 года назад +11

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

    • @johnpotatogaminggr900
      @johnpotatogaminggr900 3 года назад +12

      @@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
      @johnpotatogaminggr900 3 года назад +10

      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

  • @believerbyheart3501
    @believerbyheart3501 5 лет назад +23167

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

    • @yuckfou7085
      @yuckfou7085 5 лет назад +2286

      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
      @believerbyheart3501 5 лет назад +808

      @@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
      @bbg.ttiiannaaa2730 5 лет назад +542

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

    • @yuckfou7085
      @yuckfou7085 5 лет назад +401

      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
      @yuckfou7085 5 лет назад +239

      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.

  • @sIeepiikat
    @sIeepiikat 4 года назад +5285

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

    • @messiahhh
      @messiahhh 4 года назад +17

      Yes

    • @hynagomez8133
      @hynagomez8133 4 года назад +13

      Same

    • @Lil_7772
      @Lil_7772 4 года назад +8

      Yes

    • @Lil_7772
      @Lil_7772 4 года назад +12

      She sound so cute

    • @tsuyuasui1579
      @tsuyuasui1579 4 года назад +22

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

  • @mimi9144
    @mimi9144 3 года назад +3018

    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
      @cal4kk345 3 года назад +126

      Fly high angel 🙏

    • @bxrryggukk
      @bxrryggukk 3 года назад +62

      Angel 🥺🥺🥺

    • @caidengamez
      @caidengamez 3 года назад +6

      😪

    • @yousef4330
      @yousef4330 3 года назад +53

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

    • @starryeuphoria1105
      @starryeuphoria1105 3 года назад +28

      @@caidengamez what the frick

  • @jordyngardner8361
    @jordyngardner8361 3 года назад +2399

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

    • @Itijain
      @Itijain 3 года назад +42

      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
      @aflower6955 3 года назад +32

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

    • @Itijain
      @Itijain 3 года назад +9

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

    • @ariella2828
      @ariella2828 3 года назад +5

      I KNOW RIGHT

    • @kristynguyen3990
      @kristynguyen3990 3 года назад +6

      I really wanna be her friend too!!!

  • @islarobinson9370
    @islarobinson9370 5 лет назад +7131

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

  • @hoho5303
    @hoho5303 4 года назад +4176

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

  • @Ash33775
    @Ash33775 3 года назад +658

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

    • @ultimategod542
      @ultimategod542 2 года назад +11

      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
      @BlueifyAutism 2 года назад

      @@ultimategod542 yikes

    • @bonkchoy6881
      @bonkchoy6881 2 года назад

      You're right actually

  • @cedricradloff8152
    @cedricradloff8152 3 года назад +589

    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
      @Imnotsurewhatthisis324 3 года назад +12

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

    • @CureEB
      @CureEB 2 года назад +6

      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
      @bonkchoy6881 2 года назад

      She is SO STRONG

    • @bonkchoy6881
      @bonkchoy6881 2 года назад +2

      @@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

  • @urmum6235
    @urmum6235 4 года назад +7566

    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
      @urmum6235 4 года назад +250

      @Claire Collins not telling u lol internet safety

    • @urmum6235
      @urmum6235 4 года назад +159

      But it's not in america

    • @tyrashah4694
      @tyrashah4694 4 года назад +47

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

    • @ilovebtsandarmy8264
      @ilovebtsandarmy8264 4 года назад +64

      Really I think you are lying 😂😜

    • @Lily-kk2tu
      @Lily-kk2tu 4 года назад +26

      @@ilovebtsandarmy8264 ikr

  • @heyitstawane8773
    @heyitstawane8773 4 года назад +5130

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

  • @lunalunes7221
    @lunalunes7221 3 года назад +470

    “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
      @CureEB 2 года назад +2

      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

    • @Xyra101
      @Xyra101 Год назад

      @@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!

  • @jazzncaffeine
    @jazzncaffeine 3 года назад +1379

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

  • @b1ueberr1
    @b1ueberr1 5 лет назад +3377

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

    • @tamikabarr6732
      @tamikabarr6732 5 лет назад +40

      They don't like what she's going through

    • @Stereo6400
      @Stereo6400 5 лет назад +24

      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
      @emilyroseregan9326 5 лет назад +1

      Its 505 now :(

    • @warshanabaldew
      @warshanabaldew 5 лет назад

      Smol Potato2.0 make it 538 dislike’s

    • @kenya1301
      @kenya1301 5 лет назад +1

      Why would they be crying?

  • @jinwoo5098
    @jinwoo5098 4 года назад +2399

    Imagine having that condition and have to worry about your period

    • @kimanpangirl2117
      @kimanpangirl2117 4 года назад +34

      Armyyyyyyy

    • @arielgivan834
      @arielgivan834 4 года назад +240

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

    • @khholious
      @khholious 4 года назад +20

      Ouch..

    • @bean9291
      @bean9291 4 года назад +17

      jimin.jpeg uwu omg 😱 that would be the worst

    • @alyssabeth6177
      @alyssabeth6177 4 года назад +21

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

  • @analyamaya453
    @analyamaya453 3 года назад +213

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

    • @CureEB
      @CureEB 2 года назад +3

      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
      @liviemillie6455 2 года назад +10

      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
    @kaliyaberg9993 3 года назад +172

    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.

  • @briannamoore9306
    @briannamoore9306 5 лет назад +1651

    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
      @kallyeeckhart3914 5 лет назад

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

    • @crtsjoan1985
      @crtsjoan1985 5 лет назад +1

      yes she does deserve MOM OF THE YEAR 😣💙

    • @afreenhameed4284
      @afreenhameed4284 5 лет назад +1

      Right ✔️

    • @claredavies21
      @claredavies21 5 лет назад

      ᗪEᖴIᑎITEᒪY ♥️♥️♥️

  • @maple9297
    @maple9297 5 лет назад +5301

    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
      @minhaaa7222 5 лет назад +24

      I hope she's better now, it's 2019 😔💜

    • @crtsjoan1985
      @crtsjoan1985 5 лет назад +6

      ikr😇💜

    • @ayano4876
      @ayano4876 5 лет назад +5

      She is betuiful just the way she is

    • @wickywuth6976
      @wickywuth6976 4 года назад +3

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

    • @catfacethemole9551
      @catfacethemole9551 4 года назад +6

      No praying won't work

  • @fyoui3593
    @fyoui3593 3 года назад +46

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

  • @nettiespaghetti4401
    @nettiespaghetti4401 3 года назад +50

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

  • @maddievedder4926
    @maddievedder4926 5 лет назад +3461

    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
      @claire28638 5 лет назад +14

      Maddie Vedder ikr

    • @dallaivishesh7416
      @dallaivishesh7416 5 лет назад +9

      Yes 💙

    • @omgshefish8118
      @omgshefish8118 5 лет назад +4

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

    • @iiomq_wolffii5999
      @iiomq_wolffii5999 5 лет назад +73

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

    • @nikktings6007
      @nikktings6007 5 лет назад +5

      I was honna comment the same thing shea really pretty

  • @avamayfield6648
    @avamayfield6648 5 лет назад +2815

    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
      @sardine56 5 лет назад +23

      Hi. This comment really upsets me,

    • @danganronpaweeb7949
      @danganronpaweeb7949 5 лет назад +59

      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
      @7Lace77 5 лет назад +3

      Really?

    • @martinezmarisol
      @martinezmarisol 5 лет назад +1

      That happened to me too ava doos

    • @sorayasing3717
      @sorayasing3717 5 лет назад +1

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

  • @seleneklarelee930
    @seleneklarelee930 3 года назад +77

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

  • @isabellab1821
    @isabellab1821 3 года назад +50

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

  • @iadoresleep
    @iadoresleep 5 лет назад +5437

    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)

  • @potatoarmy5312
    @potatoarmy5312 5 лет назад +1694

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

    • @ashleyguajardo4547
      @ashleyguajardo4547 5 лет назад +7

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

    • @potatoarmy5312
      @potatoarmy5312 5 лет назад +5

      frostbeat_, your rude

    • @kr250
      @kr250 5 лет назад +2

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

    • @vucedy2223
      @vucedy2223 5 лет назад +4

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

    • @nothing-zd3ol
      @nothing-zd3ol 5 лет назад +2

      Mo Mo EXACTLY RIGHT THATS WHAT I WAS THINKING

  • @venus.2222
    @venus.2222 3 года назад +23

    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 🙏🏼

  • @tozakiivy
    @tozakiivy 3 года назад +64

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

  • @EmilyHummingbird
    @EmilyHummingbird 4 года назад +2031

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

    • @XvCiiA
      @XvCiiA 4 года назад +5

      You annoy me.

    • @roseyleatupue5309
      @roseyleatupue5309 4 года назад +6

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

    • @fluffypuppers8515
      @fluffypuppers8515 4 года назад +19

      XvCiiA Your existence annoys me.

    • @Nikol-sg9ly
      @Nikol-sg9ly 4 года назад +7

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

    • @mariamurphy3653
      @mariamurphy3653 4 года назад +4

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

  • @jingai7155
    @jingai7155 4 года назад +923

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

  • @roseisrose1276
    @roseisrose1276 3 года назад +92

    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
      @ayarriba9093 3 года назад +7

      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
      @roseisrose1276 3 года назад +4

      @@ayarriba9093 yeah ,thank you ayarriba❤️

    • @ynriddle307
      @ynriddle307 3 года назад +4

      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
      @roseisrose1276 3 года назад +3

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

    • @ireallyneedfoodrightnow8944
      @ireallyneedfoodrightnow8944 3 года назад +3

      @@roseisrose1276 l'm sorry for you're loss..
      I also had a friend too that suffered like that.. then she died.. atleast shes not suffering anymore...
      Bless you 😔💝

  • @NzPhenomenon
    @NzPhenomenon 3 года назад +43

    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
      @CureEB 2 года назад +1

      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

  • @LovinBeingNatural
    @LovinBeingNatural 5 лет назад +943

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

    • @josephharkness7957
      @josephharkness7957 5 лет назад +6

      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
      @reed2841 5 лет назад +2

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

    • @DarkZerol
      @DarkZerol 5 лет назад +5

      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
      @jno805 5 лет назад +4

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

    • @hughjass5125
      @hughjass5125 5 лет назад +2

      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.

  • @geezlouise9658
    @geezlouise9658 5 лет назад +946

    Wish I could make her pain go away

  • @rayf3313
    @rayf3313 3 года назад +38

    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.

  • @missmusicana9128
    @missmusicana9128 3 года назад +66

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

  • @cellucity7503
    @cellucity7503 4 года назад +635

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

    • @chole4615
      @chole4615 4 года назад +21

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

    • @bloosomteehee3363
      @bloosomteehee3363 4 года назад +15

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

    • @billyren5211
      @billyren5211 4 года назад

      @Nugget The leopard gecko 🤣

    • @allison.marie712
      @allison.marie712 4 года назад

      she's literally prettier than me!

    • @attaasamoahsnr9255
      @attaasamoahsnr9255 4 года назад

      @Nugget The leopard gecko your an alien too

  • @kayliehoane7793
    @kayliehoane7793 5 лет назад +449

    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
      @melanie.vallejo 5 лет назад +9

      Kayyy May God bless her. What a strong girl ❤️

    • @savssss
      @savssss 5 лет назад +5

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

    • @slide6110
      @slide6110 5 лет назад +2

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

    • @kayliehoane7793
      @kayliehoane7793 5 лет назад +1

      Lucinkle thank you :)

    • @kuuipobaby1
      @kuuipobaby1 5 лет назад +1

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

  • @seapinecone2869
    @seapinecone2869 3 года назад +62

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

  • @floraheheh
    @floraheheh 3 года назад +31

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

  • @AffordBindEquipment
    @AffordBindEquipment 5 лет назад +318

    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
      @sashablessed9333 5 лет назад +4

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

  • @lynne99
    @lynne99 5 лет назад +1564

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

  • @izyltex
    @izyltex 3 года назад +6

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

    • @CureEB
      @CureEB 2 года назад +1

      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
      @izyltex 2 года назад +1

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

  • @JustJenReacts
    @JustJenReacts 2 года назад +3

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

  • @fireflymiesumae
    @fireflymiesumae 4 года назад +424

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

  • @AzzBlasta
    @AzzBlasta 5 лет назад +224

    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

  • @pearlgrace42100
    @pearlgrace42100 3 года назад +20

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

  • @LeviAckerman-wf4ct
    @LeviAckerman-wf4ct 3 года назад +10

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

  • @katekillick1353
    @katekillick1353 4 года назад +261

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

    • @aflower6955
      @aflower6955 3 года назад +16

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

    • @yaomeii
      @yaomeii 3 года назад +1

      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...

  • @dannyv-cq2lm
    @dannyv-cq2lm 5 лет назад +533

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

    • @nono-xw9qi
      @nono-xw9qi 5 лет назад +6

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

    • @jbarbiie
      @jbarbiie 5 лет назад +17

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

    • @nono-xw9qi
      @nono-xw9qi 5 лет назад +2

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

    • @duongvantien2388
      @duongvantien2388 5 лет назад +29

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

    • @nono-xw9qi
      @nono-xw9qi 5 лет назад +3

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

  • @veramelnik7938
    @veramelnik7938 Год назад +17

    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.

  • @Ari-tr7vr
    @Ari-tr7vr 3 года назад +124

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

  • @weg5856
    @weg5856 4 года назад +396

    The mother is very dedicated, 1.5 hrs every morning.

    • @kelsey5440
      @kelsey5440 4 года назад +2

      Ikr, god bless!

    • @pragyaaaaaa____
      @pragyaaaaaa____ 4 года назад +2

      Yeah cos she is a mom❤

    • @pragyaaaaaa____
      @pragyaaaaaa____ 4 года назад

      @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
      @bellaallen9342 4 года назад +2

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

    • @readyfence7982
      @readyfence7982 4 года назад +1

      SHE HAS TO. And I respect her for that

  • @anithahelvi5048
    @anithahelvi5048 5 лет назад +386

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

    • @hughjass5125
      @hughjass5125 5 лет назад +4

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

    • @Sariine436
      @Sariine436 4 года назад

      @@hughjass5125 True. Life isint fair!

  • @popsgizbaldock9260
    @popsgizbaldock9260 3 года назад +32

    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

  • @mahi-yd8bq
    @mahi-yd8bq 3 года назад +5

    " 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 😌

  • @piggyperfection2514
    @piggyperfection2514 5 лет назад +485

    I feel so bad for her but she's gorgeous

    • @MintieTwinzgaming
      @MintieTwinzgaming 5 лет назад

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

    • @iwashere143
      @iwashere143 5 лет назад +5

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

    • @MintieTwinzgaming
      @MintieTwinzgaming 5 лет назад +2

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

    • @emmadrinksbleach3246
      @emmadrinksbleach3246 5 лет назад +4

      frostbeat_ go to hell

    • @sophiefraser3995
      @sophiefraser3995 5 лет назад +2

      100th like
      I agree

  • @OopsExposed
    @OopsExposed 5 лет назад +419

    *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
      @j6nna 5 лет назад +1

      Yikes! Sorry your pfp ❤️❤️

  • @rottierumbles9451
    @rottierumbles9451 2 года назад +10

    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.

  • @MALIBU1959
    @MALIBU1959 3 года назад +56

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

    • @ambie2673
      @ambie2673 3 года назад +7

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

  • @lala1028
    @lala1028 3 года назад +911

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

    • @aflower6955
      @aflower6955 3 года назад +30

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

    • @rakshitasingh6574
      @rakshitasingh6574 3 года назад +3

      Ikrrrr .. Ikrrrrr !! No lie

    • @ryubiekay5337
      @ryubiekay5337 3 года назад +5

      Eye to eye!

    • @inseperablekoomi
      @inseperablekoomi 3 года назад +3

      i was thinking thinking that too omg

    • @CureEB
      @CureEB 2 года назад +3

      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

  • @zacharysavage3286
    @zacharysavage3286 5 лет назад +624

    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.

  • @eightree_8318
    @eightree_8318 3 года назад +7

    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

  • @ndiiy
    @ndiiy 3 года назад +5

    "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 ✨

  • @HeyItzRosie
    @HeyItzRosie 4 года назад +473

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

    • @-_vee_-7349
      @-_vee_-7349 4 года назад +2

      And me abput my sis

    • @sleepcrs
      @sleepcrs 4 года назад +73

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

    • @kokobeans6907
      @kokobeans6907 4 года назад +5

      B ^^ this reply yesss correct!

    • @rileysharpe5215
      @rileysharpe5215 4 года назад

      Same

    • @arishana1106
      @arishana1106 4 года назад

      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 :

  • @heaven_x810
    @heaven_x810 4 года назад +1623

    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!!!

  • @Nanatomie
    @Nanatomie 3 года назад +6

    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
      @puffbaraddict8756 2 года назад

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

  • @leahscheeff7493
    @leahscheeff7493 3 года назад +9

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

  • @breannetaylor1691
    @breannetaylor1691 5 лет назад +430

    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
      @tamikabarr6732 5 лет назад +14

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

    • @imjustnae3299
      @imjustnae3299 5 лет назад +8

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

    • @Lauren-uv8nc
      @Lauren-uv8nc 5 лет назад +3

      i’m so sorry for your loss❤️

    • @lauralteif7333
      @lauralteif7333 5 лет назад +1

      R.I.P molly
      Sorry for your loss

    • @elysesummers2889
      @elysesummers2889 5 лет назад +1

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

  • @ellabeans2165
    @ellabeans2165 5 лет назад +1644

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

    • @firstnamelastname6191
      @firstnamelastname6191 4 года назад +18

      Jennies face tho (she's so cute)

    • @strftlrd8797
      @strftlrd8797 4 года назад +118

      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
      @joeyweston9001 4 года назад +9

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

    • @magpie6376
      @magpie6376 4 года назад +11

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

    • @thiscommentgoestoabout4721
      @thiscommentgoestoabout4721 4 года назад

      @@magpie6376 well arent you beautiful the way you are

  • @greycloud8057
    @greycloud8057 3 года назад +6

    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.

  • @ceydayorulmaz1642
    @ceydayorulmaz1642 3 года назад +8

    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.

  • @avalondreaming1433
    @avalondreaming1433 5 лет назад +359

    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
      @heavybizness 5 лет назад

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

    • @avalondreaming1433
      @avalondreaming1433 5 лет назад +3

      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
      @drkp4nku553 5 лет назад

      RM I would pray for her.

  • @ayushichowdhury9850
    @ayushichowdhury9850 5 лет назад +409

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

    • @himasha3234
      @himasha3234 5 лет назад +21

      😢😢 another worst pain...😢

    • @derek3418
      @derek3418 4 года назад +6

      Weird thing to imagine, but alright

    • @luvcookiezz3945
      @luvcookiezz3945 4 года назад +23

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

    • @hayleyy_.j
      @hayleyy_.j 4 года назад +5

      LuvCookiezz ive seen that before. not funny

  • @eeyoraheil2597
    @eeyoraheil2597 2 года назад +1

    She is such a strong kid, not to mention beautiful.

  • @liviemillie6455
    @liviemillie6455 2 года назад +3

    I'm so so happy that money is being raised, and the parents are not horrible ableists who want to choose to not raise a child with a disability because of the money (the kind of people who'd mask that behind false merciful intentions). Sohana is such a strong, amazing and beautiful girl and I hope in the future, even lesser known conditions will have cures and more research done. Everyone has a right to experience the joys of life. I can't image the difficulty of this condition but she bears it all so gracefully.
    Also Mom is an honest to goodness hero. Literally a hero. She's so amazing and so is her daughter

  • @ameliaxshepherdess8818
    @ameliaxshepherdess8818 4 года назад +1357

    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
      @sastina6714 4 года назад +79

      Tell your friend shes strong and lucky 🥺❤

    • @ameliaxshepherdess8818
      @ameliaxshepherdess8818 4 года назад +17

      @@sastina6714 okie

    • @heartsfromsunshine
      @heartsfromsunshine 4 года назад +33

      PastelAri omg “okie” it’s serious lol

    • @marshmellowgamer6880
      @marshmellowgamer6880 4 года назад +29

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

    • @tonyrowe2526
      @tonyrowe2526 4 года назад +3

      You guys no that she is lying rite

  • @bubu-jx6zc
    @bubu-jx6zc 3 года назад +373

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

    • @Katee2cool4uuu
      @Katee2cool4uuu 3 года назад +11

      She’s not lucky I-

    • @NarumiNazura
      @NarumiNazura 3 года назад +32

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

    • @Katee2cool4uuu
      @Katee2cool4uuu 3 года назад +12

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

    • @NarumiNazura
      @NarumiNazura 3 года назад +21

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

    • @tofu.x8428
      @tofu.x8428 3 года назад +18

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

  • @judilynlebrilla3259
    @judilynlebrilla3259 3 года назад +15

    I hope shes doing ok in this whole pandemic :(

  • @cloudzapphire7566
    @cloudzapphire7566 3 года назад +29

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

  • @Izzywasherewithhercookies
    @Izzywasherewithhercookies 4 года назад +235

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

  • @emmaloyd3328
    @emmaloyd3328 5 лет назад +471

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

  • @kodda7935
    @kodda7935 3 года назад +3

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

  • @emmasnow2335
    @emmasnow2335 2 года назад +1

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

  • @clvudii1386
    @clvudii1386 4 года назад +409

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

    • @brunobucciarati6315
      @brunobucciarati6315 4 года назад +11

      Bernice Ubochi Everyone is pretty dear. Why question HOW?

    • @clvudii1386
      @clvudii1386 4 года назад

      @@brunobucciarati6315 .k.

    • @huup5959
      @huup5959 4 года назад +2

      Especially you Bruno

    • @lu-ls4tb
      @lu-ls4tb 4 года назад +1

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

  • @joannasnedden
    @joannasnedden 5 лет назад +771

    She’s a beautiful spirt.

  • @anonymous17181
    @anonymous17181 3 года назад +3

    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!! 💕💜

    • @ireallyneedfoodrightnow8944
      @ireallyneedfoodrightnow8944 3 года назад

      I still cant believe noone commented... Also bless you and ur friend 😄💝
      I just half read it so sorry if im very wrong 😔👏

  • @user-pw6zm3lh2y
    @user-pw6zm3lh2y Год назад +1

    World need to offer more support for these children.

  • @oliverordonez3061
    @oliverordonez3061 4 года назад +158

    She looks pretty in everyways.She is a beautiful butterfly

  • @bunkoo3611
    @bunkoo3611 5 лет назад +275

    Omg guys she is so freakin BEAUTIFUL

    • @priscilla9618
      @priscilla9618 5 лет назад +2

      Daniela Ponciano She Looks Like An Angel!❤️

    • @annettecook6329
      @annettecook6329 5 лет назад

      Do you write prettier than you probably

    • @corinaaranda6110
      @corinaaranda6110 5 лет назад +1

      I AGREEEEEE SHE LOOKS SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO PRETTY😊😍😘

    • @TheoNaajiJohnson
      @TheoNaajiJohnson 5 лет назад

      @@annettecook6329 Your rude shut up.

    • @xeno4693
      @xeno4693 5 лет назад

      SLICK HEAD *you're

  • @sarahmahmood6236
    @sarahmahmood6236 3 года назад +2

    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.

  • @Lee-ys2ts
    @Lee-ys2ts 2 года назад +2

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