Life as a Blind Albino with a Rare Disorder (Adopted from an Institution)
Вставка
- Опубліковано 13 вер 2024
- Johanna is diagnosed with albinism, blindness and a rare neurological disorder known as FBXO11. She was adopted after being found wandering alone at a market in China. To her new parents surprise, she has been nothing but joyful since the first time they met.
SBSK Patreon: / sbsk
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
/ sbsk
SBSK Merch:
sbsk.org/merch/
For those wanting an update. Johanna is WONDERFUL. She is now 11 years old and still full of joy (though we do see peeks of preteen pop up now and then. LOL). She continues to be happy and giggly. We have also discovered she has quite the sense of humor! She is speaking more clearly now thanks to speech therapy and she has worked soooooo hard. Her newest love is classical music, which she calls "Castle music". ;-)
That's great! Please post more videos :)
You are the parents?
It is so great that she has a wonderful loving family now, and the family is so happy to have her too with them! Awesome!
please dont put her on medication for the teen stuff
Thank you so much for sharing the updates. Sending Johanna lots of love from UK, and would love to see her on video again if she feels it's appropriate and the parents agree!
her grasp of english is super impressive, she's only been here for 2 years (in this video) she'll be extra fluent in no time
I was just thinking that
I hope she will have some sort of visual aid in the future, she'll be able to adapt to her world a lot more.
@dolors tenas that's awesome 🤩
She's a great kid, but you guys obviously know nothing about language acquisition.
@@user-bz3kj6cs3k sorry
I didnt understand
The family lived across the street from me for several years. Her mom is so nice.
really???
No way sooo cool i wanna meet johanna toooooooo!!!!😢😢😢😢😱😱😱
Do you know where are they now? Wonderful family to addoped such a girl
If you still chat to mum tell her that a world of people adore her and her family.. amazing family.
Woah, thats cool! Shes so cute 🥺
Glad she was able to get adopted. She's cute, and her hair is beautiful.
Exactly she is really pretty!!
Reminds me of a anime character
shes nice girl help
Fr she’s so beautiful and adorable ^^
Thank you everyone (well, almost everyone) for the sweet comments. Johanna is doing great! She is still partially verbal but that does NOT stop her from getting her point across! She LOVES school and loves music. She sings along to KLOVE songs and is still just full of joy all the time.
How wonderful! I’m sure she’s such a joyful pretty young lady! 🤍
Makes me so happy to hear she’s doing good
That's great to hear. Thanks for the update!
I’m sorry but are you the mom or dad?
She is so beautiful and vibrant! I’m so happy to hear she’s doing well!!
This man is incredible. He is so good with everyone he meets. So special. Not to mention those gorgeous blue eyes.
He really is. It is such a gift that he is able to connect so quickly with people. I’m so glad we get to witness it and you can really tell this is a special moment in the participants lives.
This show is FILLED with special people. I watch the show with my very young children. They love getting to see all of the different kinds of people that make up this World.
He's such a special person!!
He’s full of it
Totally! The dude is super cool!
Johanna is so beautiful. I love her enthusiasm and joy!
I saw some comments written by you 😁 It's seems like you are happy for comment section ro be back, too 😁☺💎
Gave wonderful day ✌❤
@@alexturner1309 I am! And you have a great day, too!
Such a delicate powdery beauty, I can see her in the palest pink and blue princess dress and more lovely than any model. So glad she was rescued
She iiiiiiis, I can already see her being a model incase she ever pursues it.... she's sooooooo beautiful.
@@lizgathu7098 are u serious? 🤦♂️
Awwww she's sooo pretty. She looks like an actual Angel
My thoughts exactly!
She is so beautiful and unique! ❤
I know right? And that contagious laughter just gives her more angelic vibes!
yes, I think even for albino she has pretty unique hair tone, she looks like some fantasy character!
What I was thinking. Or like a fairy princess. She is stunningly pretty.
Her happiness is contagious
Agreed 🦋
ABSOLUTELY!!!!!!!💗
@@SUPERSPAZD 😂❤
You're so right. I just caught the giggles from her. ❤😂
Agreed
As an artist, I really want to paint her. She's so striking. So glad she's part of a wonderful family.
Well did you?
Ya did u?
@@yukiela6037 not yet, just waiting for some free time.
@@painterdawn2 ok :)
Commenting so I can (probably) be updated when the masterpiece is made so I can see the potential masterpiece
I am severely autistic. Spend a lot of time being pretty non-verbal. Due to the abuse and neglect I've been subjected to growing up, I've become very pessimistic and overly cynical. This little girl made me smile. Thanks for this.
May Allah guide you and help you with whatever you like.
OH Dear I Definetely UNDERSTAND what IT IS Like, and NO ONE can Ever Comprehend ! What We've Endured...I Can and DO Relate with YOU ❤️ I'm HERE if You Ever need a TRUE Friend 😇
I'm sorry for what you were put through, I pray you're doing better and growing as you are!
Wishing you well.
I’m so sorry to hear you were abused and neglected. My daughter is non verbal autistic and to think of her going one day without love n protection makes me cry. I’m very sorry you didn’t receive the love n protection you deserve
You can really tell how much her brother loves her. Despite being a teenage boy, on TV, having the talk about loving his little sister (which I can tell is awkward for him), he keeps going and isn't pretending to be above spending time with her.
Can you give me the timestamp where her brother is? I cant see him anywhere in the video
@@sessybunny5707 2:40 onward, in the green.
@@sessybunny5707 the Older sibling wearing a green shirt
Oh I thought that was a girl.
Agreed! The brother is so beautiful with her x
SHES SO BEAUTIFUL if anybody ever bullied her they are just jelous of her happiness and personality
omg she looks like a winter princess or fairy. i love her!
She makes me think of a fairy 🧚🏼♀️ and she’s just speaking in her own language
🥺🧝🏼♀️💚
My sister said the thing!Princess Fairy indeed!
little kids seem to have their own cute little language
She spoke/heard Chinese for the first 4 years of her life so yeah, that's probably still in her system.
@@BalboaBagginsshe looks older than 6 in this vid tho
Her brothers interaction with her is adorable
i thought he was a girl and found him pretty lol but thats just me
@@blank8479 same I was like brother what??!
@@jokerking5858 so are you.
Same...one could say he is androgynous
@ - "... hope he doesn't find any of this insulting,.." --- Wouldn't you, a pack of strangers picking apart his appearance?
How does Chris figure out the things that really juice kids and make them happy?? She loved him doing the "Yo Yo Yo", that was very sweet! And then he started getting Johanna to do turn taking! AND THEN SHE STARTED COUNTING!! OMGosh! So impressive.
he really is incredible! it makes me think probably one of his favorite movies is The little prince ^-^
some of it isn't too hard to figure out if you grew up with loads of younger siblings and spent time with them
@@Rubinkys No but it’s always different when you’re physically in the scenario. Chris is very self confident.
@@raydenbartley fair
My goodness...she is so gorgeous, loving and sweet. I'm glad she got a great family and is happy.
Shes like a lil elf. Shes adorable, is friendly and also kind and nice. God bless her❤
My 1st thought was "What a beautiful girl." My 2nd thought "What a happy child!" She seems like a joy to be around!! Adorable!! Her siblings are the sweetest kindest most loving souls!! Mom did an excellent job!!! Bravo!! I love this video. Thank you🙏🏼
Wow! I have to applaud the mother on raising her children. She did an OUTSTANDING job. Johanna is so sweet.....and those siblings of hers??They are so unbelievably polite and mature!! So loving. Amazing Momma!!💕
She is so unearthly beautyful! Truly gorgeous! And so cute and funny, my heart is melting hearing her laughter!
U have amazing blue eyes like her!!
@@milademjayyy What am i supposed to do with this info?
she is absolutely stunning. it blows my mind how beautiful johanna is. i love how bubbly and positive she is.
This little girl is like a fairy turned into a human. So innocent and beautiful.
Such a beautiful way of looking at her. Just loved it ❤️
Chris is such a great guy! He has such an awesome way with kids, its no wonder they love him! He sure knows how to make them feel special and bring fun to their interviews!
I've gone through a really traumatic experience recently and have not been able to experience happiness or light until I saw this beautiful child and her energetic warm inspiring heart. So I thank you for deeply from the bottom of my heart for making me smile again. You are a wonderful amazing beautiful young lady you go girl!!! Carry on rocking this world chick. 😘 Xxxx
Good luck!! You are so loved ❤💖
💕
Hey, hope everything is doing better! :]
I hope you’re doing well now 💗💗
I wish u the best❤
She's got to be the happiest child I've ever seen, I hope she never loses that.
Also, huge credit to these siblings for dealing with this so maturely because their lives must have changed so much.
The night night part was heartbreaking when you remember her backstory. But she is so bright and full of life. She knows what she wants and she is so confident and full of love. You can tell her brother, despite how he may feel, wanting space or watching after her, loves her so completely and would do anything for her. What a wonderful family.
She seriously makes me smile so much. Her happiness is contagious!!
The world needs this girl. Talk about a living Angel. So full of happiness and joy.
This child is amazing! She is so smart even with her disorder. She speaks English very well only being with her family only two years. She has happiness that is so beautiful. She is a gorgeous human with a great smile.
Nice of you and everyone to notice, say these things.
He's so wholesome. I love how caring and non judgemental this channel is.
Absolutely
me too!
Johanna is thriving in your home. Thank you, and many other which want to give love to children, adopting them. Issues no issues - all kids deserve love.
she is so adorable
I want to hang out with her and "YO YO YO" and make her laugh.
Horrible to say this but I’m glad they did cause now she has a better life
@@krshr39
God brings beauty out of ashes
She has a blessed life now thanks be to God for her new family and all the love and possibilities ❤️ 💕
probably bc in china they favor male babies, on top of that she has albinism so it just kinda ostracized her more :(
I also want to be with her just so I feel better
@@krshr39 yeahh
The most hilarious and sweet interview I have ever witnessed! What a little angel! I feel like every interview should include dancing and several "yoyoyoyoyoyo's" and end with a piggy back ride. 😂😂😂
imagine an interview with the president of the US going like that - if that doesn't make you laugh, I don't know what will! :D
@@Kirmeins That would be adorable no matter which it is 😂
@@Kirmeins with Biden anything is possible
I love how her brother is with her 💓
She looks so ethereal! And happy most importantly
Johanna is so happy and curious! She seems tall for her age, too. I feel like she's going to grow up to be a fascinating person.
Chris is amazing with all of the children he interviews! What a special gift!
I love how he knows how to play and teach at the same time, absolutely a gift!
Chris is absolutely wonderful with every single child and adult he interviews. He is a true treasure and manages to interact perfectly with each one by having them feel super special. Such a gift!
Shes so dang cute with her little hugs and laughter :3
I was adopted from Romania at the age of 3 and my biological mom left me at the hospital❤and now I am with a loving family and love doing sports and photography 😊
What kind of photography do you do? I want to do nature photography 🙂
oh my gosh! she is so beautiful, she is such pure light and joy and it makes me so happy that people like her exist! and im happy that she has a good life with a loving family. and that is so cool that she is albino!
This might be odd to say, but if she had Pokemons, she would definitely have fairy type Pokemon
What a magical child! She is stunningly beautiful and so full of joy! Her siblings are just as incredible! What a gorgeous family!
You sir are amazing with kids. You treat each one like the special person they are. The way you document each child's illness in such a respectful way is insightful, honest, and truly with love.
When I really feel like being ...unnecessarily rude just bc I’m having a bad day. I now turn on one of omyour vids and it’s turns my mood around makes me remember to try to be kind and realize everyone has a story behind the scenes.
Thank you.
Chris- you are an Angel on earth ❤️ I catch myself smiling & often tearing up just watching you interact w such genuine kindness & love…w/ all the kids you feature here. You’re wonderful!! ❣️
Пожелаем же этой доброй девочке крепкого здоровья и прекрасного зрения 🙂.
А ещё мозгов! Потому что при таких отклонениях страдает не только зрение, но и мозги! Зачем люди добровольно на себя такой кошмар вешают!
@@lorenaobrien751 потому что этот ребёнок заслуживает счастья как и любой другой
Наконец то добрый человек! 💕😚
@@lorenaobrien751Ella está ahora en este mundo, que quieres matarla? Esta aquí merece respeto y vivir feliz.
She seems like she can see somewhat. Like when Chris was holding up fingers. Such a lively personality. I'm glad she has a family and home that she clearly loves. Very heartwarming.
This is truly my favorite SBSK video, to date..... Joanna has a pure love that I can honestly feel through this video & its astounding, how amazing Chris is with everyone he encounters. I know he connects with all he comes across but this connection is palpable.
CHRIS, YOU ARE AMAZING!
It’s my favourite one too! I keep coming back to it! So beautiful
@@Jugi524 absolutely! I'm back again!
Not even realising I was smiling this whole time I was watching the video
Chris connects with any kid, they always love him and for that I respect lots!
God bless you all 🥺💖😁🥰
Oh gosh, the story of her background is just devastating. But she has such amazing resilience, and her beautiful family loves her unconditionally. Many good wishes to them all and to Chris and SBSK for finding and documenting this love!
What a BEAUTIFUL GIRL
with a BEAUTIFUL spirit!!!
She is absolutely gorgeous, and I'm so happy she's found parents that will give her all the love she needs. You are all so incredibly beautiful. God bless you all!
She is stunning her eyes and hair are beautiful
Johanna looks so beautiful just how she is. And to make it 100 times better, she looks so happy with her family!
Shes so beautiful,not even lying she actually looks like a doll with that hair and purple eyes wow
Her personality is soo beautiful. She made me smile ear to ear. I love you Joanna. You are a very special little lady ♡
Great exercises to keep her focus and not lose the dynamics of the conversation, this guy knows what he is doing and he is good at it.
Keep it up Chris, love from Colombia.
She fell in love with Chris, I mean, he and Johanna have the best energy I ever seen... This family is so cool
after seeing this beautiful girl, i was wondering what her biology parent will feel when they saw her, she is so beautiful and unique . i want to thank this kind and caring family who adopt her and gave her beautiful life .
What a heart of gold this family has God bless you
for saving her 🙏🏽
Amen
Johanna has a very infectious laugh and energy
she’s so beautiful and sweet :) i hope johanna is doing well!
I would never even know she was blind! How amazing. She’s so cute too. God bless her. And him!! He’s so good with people it makes me cry how genuine he is with these people.
Hallo
Chris has the best job ever, traveling around and meeting so many cool people would be a dream! I love that Johanna is so happy with her family, I have no doubt they’ve raised her well ❤️
What an absolute angel. She reminds me of another.
I was raised in central Zimbabwe, in southern Africa as a kid in a mining colony and every few months new arrivals would move in.
To this day, over 40 years later I remember the first moment I set eyes on her walking hand in hand with her parents from the road to the club-house where we used to play...
The usual calls of "hey yo! Check out the new one, yah!" rang out and we dropped down from the climbing frames.
As with every new arrival to the township, the kids stopped playing on the jungle gyms, seesaws and swings and lined the grassy path to the club-house forming a kind of impromptu welcoming committee, full of doubt and childhood apprehension.
And this girl was something special; Slathered in layers of sunscreen, protected from the African harshness by a red and orange parasol (and barely able to see more than a couple of metres ahead so I would learn from her parents), she shone like the summer's sun and was, to me at that tender age of eight, the most beautiful and perfect girl that any of the gods could have ever created....
She had a startlingly pure and profound case of albinism and was thus shunned by everyone since childhood as some kind of evil sprit since her skin was was far whiter and freer of any blemish than any so-called "European" (like myself) by a fair margin...
And because she was so horribly bullied by her classmates for being a "ghostskin" and could never master any of the maths, English or history lessons due some learning conditiion she apparently had (so her parents told my parents), I took it upon myself to help her with all her homework and tests.
I took her for her first swim at the pool and to her first bonfire barbeque, events which she found almost overwhelmingly enjoyable.
And so this angelically beautiful girl chose me of all people to b her companion, maybe even childhood boyfriend, of sorts during junior and highschool years. And despite all the bullying and hardships my memory is of her until the day our family escapaed from Zimbabwe and returned to the UK was of her remaining so steadfastly and indomitably happy and positive and being the kindest, closest and warmest friend I ever had.
Dear Natalia, I truly hope the world was kind to you after our family repatriated to the UK, in the years following the independence of Zimbabwe! To this day, I still think of you.
I truly hope that any gods that may exist and more importantly the people around you have blessed your beautiful, kind soul with all the happiness it deserves.
i love youre writing style and natalia sounds like a wonderful girl
You guys are so awesome, we adopted a girl from Russia 🇷🇺 and it has been the most satisfying blessing I could ever have imagined. Our God is so amazing. It is so wonderful to see the happiness and life you have given this child. It touches my heart so much to know she will now have a wonderful life with a family that has so much love for her. May God Bless you and all that 🙏 takes care of his children in need.
She's absolutely adorable and this man is sweet, being nice to every kids he meets :''')
That's heartwarming
What a ray of sunshine 🌞 love you Johanna♡♡♡
Awww how cute! she has the cutest smile and just seems like a joy to be around 😆
Chris you are so wonderful, we need more Chris’s in this world. If everyone was just half the person he is little by little we could change the world and finally learn how to love one another.
It's so sad how much the original parents carried judgement. They literally left her at a market and dissapeared because of her conditions. That's heartbreaking. Nobody asked to be born this way so it's like why even do that to a child who has no clue of anything? 4 years old wandering around the market? Wow 💔 im glad the family adopted her because she is such a loving person and she is full of joy and very playful. How could anybody give up on her? She deserves a beautiful life at least.
china is quite a brutal place for disabled children. Or anyone who is born different, like biracial or a different ethnicity. Their society doesn't really embrace non discrimination yet
Well you assume this! You dont really know what happen
You really have no idea what their situation is. I’m glad she’s in a home that takes great care of her now, but we don’t know what the parents situation was.
it’s easy to judge, but there could be a multitude of reasons they had to leave her.
She's such a positive person despite being dealt with so many bad cards so early on in life.
It’s wonderful that Johanna is so loved and so happy. Chris is so good doing these interviews. What a privilege to be invited into Johanna’s world. Follow up, please!
Yoh Yoh Yoh Yoh Yoh 💞💞 what a heartwarming interview,I'm smiling .She is such a sweet angel
This is the family I pray every adopted child receives! 🥹🥹🥹 Johanna is surrounded by so much L❤VE! Johanna has such stunningly beautiful features, she looks ethereal with her Snow White skin and hair and her beautiful eyes look almost lilac in color! She could be a model she’s so beautiful ❤
Her soul is just as beautiful as she is, she’s so sweet :D
How she became so fluent in english in 2 years is incredible. shes so smart and so incredibly beautiful I am surprised she has not been offered modeling jobs
She is disordered, ever seen a disordered person in an advertisement.
Imagine a beautiful downey wearing gucci.
That’s why she isn’t a model, it’s just too controversial.
Chris you are so good with finding out how each individual communicates and interacts with the would around them. Not everyone can do that.
Chris is so genuine and his ability to connect to others is truly magical.
She looks like an absolute gem to be around. She seems so happy and cheerful it's just like a different form of music.
I feel like she's just legally blind since she can look at people's faces and accurately point fingers or put her hands on people, still, any amount of blindness must be really tough to live with, but it's great that she's so happy. We should all really take inspiration from her, so happy despite her position. We should all be happy and just grateful that we're even here at all to experience the beauty that is life, no matter how hard it may get.
This child is gorgeous. I'm happy to hear she's doing amazing.
I work with learning difficulties and occasionally get to meet and work with stars like Johanna who really bring joy to the work 🌻 I hope she and her family are thriving.
What a ray of sunshine Johanna is. It’s hard to believe she has only been home for 2 years. Sending you hugs from Australia Johanna! You gave me the biggest smile! 🤗 😘 🇦🇺 🐨 🦘
Thank you for showing people with different diagnosis’s so others can learn to be understanding and treat people who are different with love & respect! Good job!
I love how good of a bond she seems to have with her brother. You can tell they love each other a lot.
I cried so many tears of joy this video. Chris, you are an amazing person.
The friends she will have throughout her life, will be the luckiest ♡ the joy is so contagious ♡ I also love this family ♡ you can see the love they have for each other ♡
Edit: I don't get why people are being rude in the replies? I just made a bare suggestion that she could have been speaking in some language. What matters is her growth, not whether someone in the comments knows the language. Keep the focus on *her* wellbeing, not others mistakes.
OG-It seems she's speaking quite a bit of some Asian language when it's considered 'inaudible', an interpreter may be great help for her learning language and seeing what language she already knows!
Of course I don't know the family though, and she seems happy as is so whatever is best for her now. :)
Yeah i'm curious what she was saying too!
Yes although I don't have any concept of her mental disability it's possible it's restricting her from learning the fluidity of English. It's possible it causes a hard time with her adjusting from an all mandarin (I assume) society to an all English one. This could cause a problem with her not knowing that she's not speaking English. She might think she's communicating when she's not. I think it would be very beneficial for her to work in a language specialist program to help with the language. Two years isn't much for someone with a mental disability to learn a new language. But again, I don't know anything about the personal life so I cant really set that in stone
She aint saying anything. Im chinese and that was far from chinese.
@@Aurora-jv8ce really? I thought it could be Chinese too! Thank you for clarifying it for us!
Those aren't words at all. Don't over think it.
I never come away from a Chris vid with dry eyes, I just want every child to have people like him in their lives, each child deserves such love and understanding.
If this man ever becomes a dad, he's gonna be great at it. Also, I adore Johanna!! 💖
She’s so vivacious and beautiful! Her relationship with her brother is particularly special. These kids learned about compassion and empathy through their mother and the world is a better place for it 💖
I rewatched this video when I was down so many times. She's a sunshine❤.
Она так прекрасна и жизнерадостна, все время улыбка не сходила с лица) ✨😊✨
shes so bubbly and gorgeous 🥺 best wishes for johanna and her family
Chris, I’m convinced that there’s a very special place for you in heaven. I love watching how kind and loving you are to everyone you interview.