Living with a rare skin disorder | The Skin We Wear | Full Episode
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- čas přidán 25. 01. 2020
- *This documentary contains images that may be disturbing to some viewers. Viewer discretion is advised.*
Harlequin Ichthyosis is a rare genetic disorder that causes thick and scaly skin that is prone to cracking and constant infections. In the past, babies born with this condition rarely live beyond the first few days. Today, sufferers are able to lead normal and productive lives - but not without obstacles.
From 2-hour long oil baths and constant moisturising, to stares and judgement from strangers, their struggles are physical, social and emotional.
Enter the lives of four individuals coping with Harlequin Ichthyosis in Singapore, Hong Kong and Vietnam. Three-year-old Zoe may have lost all her hands due to the condition, but she's not lost her joy for life. Despite being visibly different, 13-year-old Aliya navigates the teenage years with grace. Two-year-old Ngoc Bich is an orphan in Vietnam, waiting for a family to adopt her. And 26-year-old Mui Thomas' achievements are proof that a fulfilling life is possible even with a lifelong condition.
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Find yourself a man like him , even tho his daughter is like this , he didn't abandon her and loved her the same
No matter what disability a child has they should always have their parents to love and support them
@@foxx7082 welp , some irresponsible people just don't think so
Fr I need a him in my life.
@@gabimartinez2873 ikr
Yee Xuan yaa he is a real man! 😊
I'm Mui, I appear from 6:59. I'm really glad that this documentary was made. Hopefully we can use this to raise awareness of Ichthyosis and related skin disorders.
Love from Hong Kong
You're incredibly strong. I admire you so much!!
How is life? And I Hope You will feel better soon! :')
Hi Mui, thank you for sharing your story. I just want to let you know you inspire me to be stronger and more positive. Just want to let you know you are bringing joy and positivity into this world 💕
Hi Mui ,
Thank you for appearing in the documentary . I am really amazed and inspired by your confidence and your strength. I love how you are unfazed by the way some idiots look at you and speak about you. I certainly learnt a lot , a lot really. I will try to imbibe all the good qualities you have and tell others to do the same.
And I am sure the documentary will spread awareness about Ichthyosis and other skin disorders and encourage people to look beyond the superficial covers.
Thank you! and wish you the best of health and hope you succeed in all your endeavours! Much love to your amazing parents!
Hi Mui. Thank you so much for sharing your story and educating us. ❤
Zoe's father is probably the best father in the world. For him to think about how she feels when he is first presented to her and in a situation in which any other person would have decided to abandon their child, was what first showed what true love and care means... And the way he is educating his children about their sister's condition is also amazing.
Ummmm not every or “any other” person would abandon their child for such a condition… Maybe SOME would, but to imply that any “average” person would abandon their child for any reason is wild
Zoey's dad is such a......I can't even come up with words in the English dictionary, to describe what an incredible man, husband, human being he is.
im literally 40 seconds in and so stunned by her confidence already, literally playing with her sister saying "where are my fingers!" and giggling about it
despite her illness she's such a happy child and her father clearly loves her so much
she is a precious little angel oh my god...
edit: i love how supportive her siblings are, what a wonderful family - he has done an amazing job as a father
EXACTLY😭
EXACTLY 😭
also watching this again, he is a very handsome father too
just... just throwing that out there lol
I wonder where is the mum😢😢😢
Khiet D Chau I have not see the mother in the photos or in the video. But the mother have other kids then I’m confused why she would leave them as well (if she left them) the mother could be still there for them but didn’t wanted to be in the video. I can be wrong 😔
I was born with eczema, always thought it was terrible and how my life was miserable. But after knowing that this kind of skin condition exists, it made me really sad, she's so confident and happy. I can relate alot to the fact that showering and bathing hurts. God bless this little girl.
I hope your condition gets better
I am born with eczema as well!!
Even I have eczema and thought my life was bad and after watching this video I felt like I shouldn't be complaining
Every one shine in our own way. An army too XD
You alaways be the best, i hope you always happy ever after ☺
*"Beauty is not in the appearance, but beauty is in the design and its ability to achieve its function in a very unique way." Zoey has a remarkably profound father. His love for his children is undeniable and absolutely paramount to their livelihood.*
*We all need someone like him in our lives; or better yet, we all need to BE that someone in other's lives.*
l agree❤
As a disabled 24yr woman this made my cry hard!!!! We need more people like him in the world!!!!
Everyone talking about zoe's father, but I love the lady who is volunteer and she take care of the abandoned baby, God bless her! ❤️
THIS. When she cried out of love for her, I cried. She is an incredibly beautiful woman.
Me too
Это. Япония. Или Китай?
The small little “cannot! cannot!” My heart 😭
다이Ddaeng i know! I instantly started crying. Sweet baby oh my ❤️ i hope her the best
I believe there must be a better way of soaking her hair. Hope someone has an ideal. May be a shower pillow..
@@childofthemighty1341 Lol you’re such a dumb ass. It has to be exfoliated moron, it has nothing to do with simply laying her head in water.
@@alliecatxx7921 why was it necessary for you to call people dumb ass and moron. Everybody's on here giving postive vibes except you. So she didn't understand the video. And thanks for explaining. But you could have don't it in a much more humane manner. Here these people make a documentary to educate and stop the bullying. You on here bullying. Sad.
@@childofthemighty1341 it's not the water ,it's her hard scalp and the father has to wash it and massage it so the dead skin in her hair can leave ( someone correct me politely plz) but obviously it has to hurt so I hope there's another way to relieve that pain for her but still get out the dead skin.
So just ignore that unnecessary rude comment, I don't know why they tried to correct you that way, you didn't know and was only offering a solution.
However please stay safe in these times and Don't forget to hydrate
GOD give me a husband like that loving, patience,hardworking and understanding Ameen.
Amen 💜
Yeeesss Jimiin sadly the wife left. i assume, the mother is no where seen not even in pictures 🥺
@@lavendelelv Omg i needed to know that like where's the mother atleast they have their grandma💔💔
Yeeesss Jimiin Amen
Yeeesss Jimiin God please give me a husband like him too. Was his wife? She was not there
The Dad on seeing his daughter for the first time - "My first thought was actually, how is she feeling?"
What a wonderful father to have. ❤️ And such a beautiful family.
Everyone’s talking about Zoe, but I was crying for Ngoc. Poor little girl was just abandoned and left.
People don't want to talk about the sad parts. I wish I could adopt her honestly, I already have 5
I know😔 I hope she has found a family at this point, she is so precious
i just realized that zoe's name in chinese is happiness/"joy" when her grandmother is calling her in chinese. she was wonderfully named, right to her personality!!
I think her Chinese name is 凯欣， that’s what her grandmother called her, it does sound like 开心 though.
kăi xīn
Usually ur name ends up influencing your personality so...
Zoe is as cute as a button I adore the way she just says it as it is and her speech is great. Her older siblings are so loving. They are a lovely family. I would love to see how all the children and Mui are doing now
zoe's dad is the true singaporean of the year. i hope that in the future, any endeavours on his or zoe's part will be met with support and that there will be more awareness of conditions like this in singapore and the region. godspeed to the families in this documentary and i hope the kids grow up to be strong, intelligent young people. i can see it in them.
Quite rightly he adores wee Zoe as much as the older children and he is so attentive to her needs the other children are a credit to him too as they love their baby sister. Zoe herself is a clever wee girl and like Mui will do well because of the love and care she is getting at home
Zoe’s dad is truly amazing. The way he recognized that she might have self-image issues and things later on and then being an encouraging dad and being a loving and accepting father. Their whole family is very wonderful. The nurses from Vietnam are also really amazing for running that orphanage and also taking care of the child, it can be hard if there isn’t a lot of resources to help.
The part where Zoe's dad is feeding her and singing to her made me cry so much because the way he looks at his daughter is a feeling that he loves and cares for his daughter much and it's so beautiful to see
Zoe is so beautiful and an intelligent child she made me cry so much I wish God's healing upon her
We need intelligence for this kind of things in medicine... 🕊️👑Zoe is amazing
Better than your ugly face
@@chickennuggets9016 yeah ok boomer
@@aprilsun516 I'm speaking facts
jew no it’s ur opinion and really no one asked for your negative opinion. 🙄🙄
She is blessed with a loving family.
Yeah
I feel so bad for the baby in the adoption center because no one wanted to adopt her i wish i could just give her nice life so she never feels unwanted 39:36
iiBrxken_ tbhxX i think the parents doesn’t want to have the responsibility of taking care of the child conditions as they said it’s a 24 hour care so I think many parents do not want that. But we can hope and pray that some wonderful parents out there will adopt her one day.
@@AquaBloomStudio yeah
I started crying at that part u can see how lonely she is in her eyes ❤️
@@charlotteanderson5953 ikr its heart breaking🤧
Wow thanks for the likes😊
He's such a loving, patient, and understanding father. We need more father's like him. His children are so blessed.
I have a niece that has this but she has all her limbs. He’s absolutely beautiful and extremely lucky to have an amazing family that loves him as he is.
It's a girl
@Chrissy Luv they were talking about their niece, so even then they would be wrong
Niece is a girl nephew is a boy
Tiana Murray yes
Chrissy Luv yes I meant my niece has this. I didn’t realize when the video started it was a girl as well. I realized after I had posted my comment.
Hi, I'm Lupe and I have Lamellar Ichthyosis. I am 22 years old. I hope this documentary raises awareness for Ichthyosis and other skin related disorders ♥ I love to make youtube videos and try to live life. I hope you guys can learn more about this disorder and try to raise awareness!.
What is your you tube? I have a nephew that has E.B. it is so painful. Breaks my heart to watch him go threw this. His mom an gma have it as well but not as bad. I know this is just as painful as EB too.
Stephanie Long Lupitagee21 and aww 🥺 tell him I said hii!!!
You are beautiful Lupita❤
@@LupitaGee21 i sure will. An ok i am going to try to find your channel. I am not all tech savvy an usually my kids get me the stuff i want to watch an keep up with. Lol. Plz keep being who you are an never let anything get in the way of you being wonderful. I hooe between your channel an this doc an everyone else that has put things out on skin disorders will teach others about it an the parents can teach their kids to not bully ppl who look different. I watched my nephew come home crying due to kids being so mean. I have seen red due ti it an have wanted to go to the school an snatch the kids up an bust their butts like their parents should do. But I have to remind myself that the kids do what they are taught an their parents are who need their butts tore up. Keep being strong an thank you for being amazing.
I’m 18 and my 2 sisters and I all have lamellar icthoysis
When the people went to the healthier baby and left Ngoc Bich alone, that really hit hard man. I’m crying so much right now. I hope a family who can truly give her all the happiness has found her. She deserves all the happiness in the world. I wish we got an update on whether she got adopted or not.
Yes that was heartbreaking. I wanted to pick her up through my screen. I was hoping the volunteer could adopt her.
@@michellehitt1976 same here
Her skills feeding herself the rice are amazing, warriors to the core, bless them
I salute him... That girl is so lucky to have a father like him..
*"i dont want that to happen to my baby sister."*
my heart just melted
same 🥺
Loved that part. Made me fell that he’s going to definitely defend he’s baby sister what a great lil brother 💪🏼 Zoe’s lucky to have such a loving family except mother
Omg same... tears poured
I was doing okay until the brother said that 😭 😭
This vid touches my heart garrantee she can think faster than most humans loving family tho ay great vid
Zoe is so cuteeee especially when she said “hello” to the camera while grabbing on a handle with her grandma, and I don’t understand how people can dislike the video🥺
The dad is so sweet, literally singing to her and playing the piano... such a supportive dad :,)
not to mention the girl is so sweet
her father is a blessing
I feel so sad that when the kid says "where is my finger". she is so strong and incredible!
The father, sister, brother, and granny all give this toddler so much love. I'm very impressed with this father's eloquence and patient devotion.
He is a GOOD single father. I love how her grandmother helps the family out so much!
Did they mentioned him being a single dad? 🤔
@@wongmuifong8370where is the mother
Zoe is incredible but I am more amazed by her father. His Christ like approach to the situation is an inspiration for us all.
May Lord Jesus continue to bless your family. Amen.
Amen ❤
Amen
This has nothing to do with "Christ like" - this is the unconditional love of a parent pure and simple.
Nataschia Wilisch He’s a Christian. The fact that you had to get triggered by comment is just sad...
LORD JESUS GUILTY --- OF CHILD CRUELTY.
It broke my heart to see Zoe cry while her dad washed her hair. 🥺 Her dad is such a good person, I salute. Her siblings are amazing.
why she was crying
@@Icyxlpain. She's in pain
Zoe’s dad is a true example of a parents unconditional love for his child.
I adore this man! XX 🙏🏻🙏🏻💗
Zoe is not unlucky to have the skin desease, she is very lucky to have such loving father at her side always there to guide him.
this baby is super intelligent and independent at this early age. such a gem. and well done to the dad for being always patient and kind. you're awesome!
The fatherly love is amazing, God bless this family and zoe....
Both Zoey and Mui are very well-spoken and expressive. I love their bright energy
Zoe, Mui, Alia & Diem are all such beautiful and special children. They deserved all the love, respect, dignity and care from people in this world. I wish them happiness and good health.
Charis and Benjamin seem so mature and caring towards Zoe.
Mui is such a lovely lady, anyone would be lucky to be her friend.
Yasss❤️
He’s won the award for the worlds best dad😍🥺 OMG she is so beautiful
That dad❤️😭 These people are so inspiring and share such a great message: never let your disabilities get in your way!
That is a real dad! Instead of thinking about himself he immediately wanted to comfort his little girl and hold her! shes so lucky to have such an amazing dad and siblings. I wish that family all the best and hope more people can be like them!!
My heart broke when the couple in VN chose the baby over Ngoc Bich and Ngoc Bich just stood aside watching the baby get the attention... if only I could just jump on a plane and take her away from all of the social rejection and hurt that she has to go through at the orphanage when potential parents see her and are afraid of her...
Make me sad, cry and feeling hurt too... hope oneday there are parents who want to adopt Ngoc Bich, love and care to her...
@blowing tree How grand of you to speak of my character when you know nothing about me. What you say and how you speak only reflects on your character, not others sweetie. Bless your heart and spread love not hate.
@blowing trees i think ur having a bad day 😕
treestrees you're one of those toxic stans I see
Crafty Huynh same I started crying at that part u could see that she understood that she was getting rejected 💓
Zoe’s dad is doing an amazing job at caring for and raising all of his children. So much love and respect for him ❤️
it makes me happy to know that Zoe has such a great father and siblings who takes care of her and treats her as an equal.
She’s so cute!. The father is a good man and I can see he truely does love his kids 😭😭😭
“Look at my hand,I don’t t have fingers”
That hit me so hard😭
Bless the single dad having to take care of three children with skin condition
And also the 26 year old, she touched my heart when she started crying 😭
The dad is such a HERO!!! May God bless him!!! He is such a role model and a gift to his children.
The dad!! Wow!! She is a beautiful blessing and God gave her to the right family.
each and every child here are so blessed with the good family support. kudos to parents who never gave up on their child, biological or not. thank you parents for staying so strong! ❤️
Two of them *were abandoned by their birth parents - and it appears that the mother is absent in the other...so one out of the four was not abandoned
zoe's daddy is so wise in saying the beauty is in the design. brought tears to my eyes.
Zoe`s father is amazing, so kind, caring and loving to all of his children.
What an amazingly loving father. So nice to see a parent take such an active role in caring for their child with special needs, I love it.
Zoe dad, u r the only singaporean guy i seen so brave. I really respect u. In future if u need any help can PM me. N will send u my contact number. Ur three kids all look pretty n handsome in all our heart. They will grow up healthy n clever. Ok bro take care neer any help pls PM me.
That is so good of you. I need help. I'm sincere and serious. I apologize if I disturbed or offended.
Chole Hart sksks
@Titus See I'm trying to find out if he is indeed a single father. I would love to have them start a gofund. Zoe is a beautiful little 🌟!
@@cholehart5811 Many need help & I'm sorry to hear that. Where do you live as there might be resources for you.
Zoe & her family are the ones being shown here though. Have a blessed day.
@@The-ii5mj im in a shelter now
Here I am sitting in my room feeling sorry for my self thinking I got it hard in life. Man I feel so bad and lucky at the same time ;(
Stephen Dyson it’s helpful to get a wider perspective but it doesn’t mean your own sufferings are not real... hope you get to a better place soon!
F Santo totally! That gives us clarity of perspective which is helpful when we are too buried in your own worries.
The volunteers and nurses at the orphanage are beautiful people, especially the one lady who is so attached to the little girl.
Zoe's father is like an angel. The way he faces her illness and just says, well, we take it one day at a time, always telling her how beautiful she is, it's so sweet. I wonder where her mother is. He has his own mom there to help with the three kids. I wonder if the mother just left the family...
Zoe's father is a true gem of a human being. When we talk about humanity, we should think of humans like him. Strong in the face of adversity, yet warm like the summer's breeze...
Well said!
I shed tears throughout this whole video. We complain about the smallest things but this little girl is so positive despite her hardships
Amazing how much the parents do really
*Dad
I’m humbled by your unconditional love and compassion..... anyone can be a Father but it’s a very special man to be a Dad!
Much love sent from the U.K.. X
Kudos to the dad for being so gentle, kind and loving!
A great father. Prayers for them.
I’m amazed by her self confidence
How shocking to see how this condition is managed. The financial constraints towards treatment is unbearable to watch. Zoe's dad clearly doesn't have a pot in which to piss, but he is so dedicated, It's so sad to see him struggle so much just to care for his child. heart breaking. This, to me is the measure of a man, willing to do whatever it takes to see his child safe. A man among men.
this man truly amazing. you can really tell how much he genuinely loves his daughter. he doesn’t care what she looks like, or how much extra care she needs. he loves her and takes care of her no matter what. bless him ❤️
He's such a good father, skin condition or not, he loves her so much perhaps even more because of her condition, she got very lucky.
what a brave girl. shes smart and independent. kudos to the father and the rest of the family.
The families in this piece are incredible. The all did research and put so much effort into creating a healthy environment for their child to develop happily and confidently!
The Dad is my hero! I commend all your hard work, patience ,and how nurturing you are with your daughter. he is the definition of a real man and father
There's a boy in my school with this condition everyone knows him cause he always high fives everyone in the corridor
That’s awesome.
When ever u see this boy let him not that Yt Said hi
U said that HE high 5's everyone? Is that supposed to mean Anything to YOU? Why don't you stop the boy. ..Introduce yourself, say HI and make an effort!! I don't know about anyone else, but your comment only pissed me off at your lack of caring for another person!
Zoe’s dad is incredible! Does he need any financial help? Happy to contribute to make their lives easier
I love so much how the father is so accepting of everything. He accepts, adapts and moves on. That's a rare quality.
And I can tell by the way his daughter behaves so confidently and independently at that very early age, that she has got it from him and his attitude.
Her siblings are undoubtly very protective over her.
Really such an amazing family. Praying for them and their happiness! 🙏🏼
I'm impressed by the parental care the kids received. Well done families! It is a wonderful contribution to the society we live in.
I have a brother that got Ichtyosis too, but probably it was the Lamellar one,
his skin/scale is thicker and darker than hers. I remember how he couldn't close his eyes completely when he slept.
I was afraid of the fact that I would lose him before he could went to kindergarten , because the doctor said he won't be able to live longer than several years due to some backbone issue that came along with his skin condition.
He was my first sibling and my parents had waited for 2nd child for so long, so it was heartbreaking to see him like that, and I used to worry about the others would treat him bad.
But,
Praise God he is still doing good today, making friends, and serve God with his God-given music talent.
Hope Zoe and the others will have great future ahead too.
God bless ;)
PS, he has channel named Vocaso Galvani (if you wonder how is he, and hope you like his guitar covers) 💜
I was going to ask about the sleeping part...like is that the same for all where they can't close their eyes completely
@@pandalala888 well I have not done any research about that, I mean I just tried to find some articles related to general clinical symptoms like the differences on the onset , and the daily treatment.
But may be some people will have same problem there , because as what I saw in my brother's case is that his skin so dry that his eyelid movement is so restrained (idk if it is the right term), like the eyelids won't completely streched to cover the eyes like in normal people.
Sorry if this not the answer you expected. God bless u
@@zev1342 oh no thank you..I think what you said makes perfect sense
God bless you and your family
She is so clever can even turn the spoon around to eat :") ... keep up the good work girl .. am so proud of you!!
This is the second time I’ve watched this. It warms my heart and I learn something new every time I see this documentary. I wish hope & happiness with all people with this skin condition but even more so to the abandoned ones
The love that this dad and Zoe have for one another is so beautiful
The song that the baby sung in the beginning is so heartbreaking and ironic :(
"Daddy finger daddy finger where are you?" 😔
I don't know why I'm crying
Is it struggle, courage or family's love.
Incredible Dad, he’s so compassionate and caring. Great piano skills too.
What an educated, supportive, loving father!
Zoe is so beautiful and she has such a loving family. When her sister said “her fingers are on the way” “ they are growing slowly “ that made me smile. Keep believing baby. peace and blessings to every family represented ❤️
That made me so sad. That her sister didn't understand, or couldn't accept the truth.
So happy CNA is uploading documentaries now! Thanks for uploading and sheding light on more sensitive and lesser known issues
Ive never heard a more soft and sweeter way to express his love with his daughter then dad. And then moms interview made me cry
Zoe's dad and grandmother are amazing. My heart feels so warm.
Bless all the family who love unconditionally and taking care of them ...
Seriously love Zoe and her family. Best wishes to Zoe’s papa.
Just breaks my heart how some parents can abandon their own flesh and blood kids. Doesn't matter if they have a disease or is deformed, they are still your kids. I am a mother and my baby girl is my life. I would gladly give up my life just so that she can live and have a good life.
it breaks my heart to see how innocent she is and how brave she is to face her reality even as a kid
The love the father has for his children is very admirable. He adapted to the situation and loves hs daughter undoubtedly. I don't believe that he ever questioned his involvement in her life, and he really is a man because some ppl would, just abandon their child. God bless him and his family. I will there were more angels in the world like him.
Zoe is such a confident, amazing, and intelligent child. She will grow up to be such a strong woman and she has such a bright future ahead.
God bless Mui, Zoe and all of the very brave children in this show. And to Zoe's very loving father- your faith, strength and joyfulness can only be described as inspiring.
This family melted my heart. Their so wholesome and genuine they love each other very much. I hope they stay so close.
I haven't cried so hard in a long time. Thank you for sharing their stories, looking forward to more from this channel.
As a severe eczema patient, I can feel their pain by watching this. Skin diseases brutally hurt me physically and mentally.
bichs case seems less severe compared to others, praying that someone good will find it in their heart to make room for her in their family!
Yes! And the volunteer woman taking care of her has such a good heart though 😍😭
This whole documentary made me cry. My heart is so full from all of the parents (and volunteer) along with the kids. I wish all of them absolute happiness.
She's adorable and has a sweet spirit. Her family are so loving and very accepting. Sending so much love to this family! 💓