A Child Who Can't Speak or Blink (And How He Communicates Anyway)
HTML-код
- Опубликовано: 8 ноя 2023
- Prince was born with a rare neuromuscular disorder known as X-linked myotubular myopathy. This prevents him from speaking, blinking, walking, and eating. He is currently learning to communicate with assistive technology and enjoys connecting with his family. Prince wants others to know that he loves making new friends and talking about animals.
Support SBSK at / sbsk
This family is originally from Nigeria and now lives in the USA. Oluronke, Prince’s mom, founded an organization to help disabled children in Nigeria. She told me that there are less services and inclusive practices in Nigeria and she is trying to change that. You can check out and support her foundation at www.treasuredkidsfoundation.org/
Wow cool 👏🏻👏🏻👏🏻👏🏻👏🏻👍🏻
Such amazing parents, and such sweet, smart and kind kids, I hope this family get everything they need in this world ❤
😊😊😊😊😊
Thank you for sharing this info.
❤❤❤❤
I love that he complains about church just like every other kid. And gave his sister an 8/10 😆 Prince's dad is so sweet and funny, what great parents.
I love how his mom was just happy that he was able to tell her how he felt about church, even though she may not agree with him on it.
I was laughing at the 8/10 too. What a wholesome video. ❤
I'm 47 and still complaining, mind you I haven't been in about 40 years 🤣
When he rated his sister 8/10 I literally laughed out loud!😂😂😂❤
He might feel extra uncomfortable there, you know because of how other people might react to him there.
I lost it when he rated his sister an 8! At least he's honest! 🤣He's really great at using his communication device!
I was cracking the f up too!! So straight up 😹😹💗
😂😂😂
He is awesome on the device! I wish my 18 year old was this skilled but she gets fixated on certain icons and repeats them continually.
It's crazy to think how people with that condition lived before the invention of that tablet device. Supposing they're unable to write or use hand language, their minds would be pretty much trapped inside their bodies. Because it's clear that his cognitive abilities are perfectly normal. He's a bright little boy, and it's SO GREAT that his mind is able to interact with the outside world at an intellectual level. Very inspiring.
yeah it’s interesting to think. we’re lucky because my brother, who also has this condition, is able to communicate through a whisper-talk. it’s not super loud and it’s through a ventilator but even if most other people can’t understand, me or his nurses or his other family will translate
No that never existed because there wasn’t fluoride in the tap water back then
In general too. While there is still a lot of work to do as society has been built to cater to able bodied neurotypical people accessibility has come a long way
It is not easy at all to teach children how to use an AAC device, what a great family that raised a beautiful son.
Plus spending the money on them! Some of the most popular apps are over $200!
Thank you❤
it's one of the absolute best resources they could give him, great to see him so comfortable with it :)
@@LawnOfCorn that’s absolutely wild. I would hope health insurance would cover at least some of the cost, but knowing most health insurance companies and policies here in the US, I doubt it. I’m guessing the high price is due to the cost of developing and maintaining the app, and hope it’s not a predatory money grab. I’ll definitely be doing some reading on the subject, thanks for a new rabbit hole to tumble down (not sarcasm, I do really enjoy finding new topics to educate myself on).
Those devices cost over 8k. Closer to 9k actually. I wish they were easier to access because they certainly change lives. My son just got one last year.
Except for his muscular disability you can tell he's an intelligent child with normal thought processes. I bet he's actually very intelligent. As he ages and becomes proficient with the use of a computer and is old enough for independent internet access he'll probably be able to do whatever he wants that doesn't require physical muscle use. I can see him having a tech job in the future and living a semi independent life with a paid caregiver or a partner to do his caregiving because they love and value him. I'm not aware of the current life expectancy of someone with his disease/disability but do know that many diseases or syndromes have recently been having life expectancies extended with new drugs and treatments. I hope this is true for Prince.
This is a serious genetic disorder which does not impact intelligence but currently has a poor outcome for children who have it, unless their symptoms are relatively mild. Gene therapy is promising but still in early stages.
my brother also has this condition and he’s almost 16. i can tell you he’s extremely intelligent and creative. he writes his own stories and draws on his ipad just like normal teens his age. people with MTM can do all the same things in that area :)
@@sharonkaczorowski8690 We can all hope for life extending treatment(s) or a cure. We should all try to help contribute, in whatever ways we can, to help the research towards treatments for diseases and genetic conditions. The progress made with treatments for both cystic fibrosis and SMS within the past few years has been truly amazing and the new treatments are not only extending the lives of many people but really improving their quality of life too.
He is intelligent! Not "except for his muscular disability" muscular weakness is not the same as cognitive impairment. :D
Thank u everyone for taking care of prince
"Who's your favorite person in the world"
*"Mom"*
Prince didn't even hesitate, showing how much he loves his mom and that she means the world to him just as he does to her. 🥰
Hi, Prince’s mom here😂 thanks for your comment.
When Prince's brother responded "yeah, how great" my heart just melted...😭💜
Me too. His brother seemed so happy that Prince said that.
@@jennyn5692 😊
"8"...our man here is stone cold. To be fair though, all sisters have cooties and that yields a 2 point deduction which means 8 is the cap. So technically, after the mandatory cootie deduction, the sister is really doing quite well.
Hearing "eight" after the suspense of him thinking and navigating his speaking device got a good laugh out of me. Such a sober answer
😂❤
@@Rostam. Our man really did give it a pause for real calculation and it about doubled me over when he hit us with just "8"
I thought maybe he's just difficult to impress. When he gave his dad a solid 10, I was like oop 😮
Your comment is wonderful and so true! 😂
His sister was an 8, i hollered! one thing is for sure ... siblings are still siblings regardless of disability, etc! they are so cute!
Me too! 😂!
What?
@@kkk-gf6sj She didn't review the SNPs.
@@minoritycontrarian2022 what
@@kkk-gf6sjjust watch the video got no idea what that other commenter is saying
"Glad you're not sure about my work." I interpreted that to mean that he was touched that sister cares that she wants to be more helpful. ❤😢 What a sweet soul!
I thought it was a very mature thought to communicate
Chris, I've told you this before, but I LOVE that you include the whole family. Having a disabled sibling is isolating and beautiful and life altering in a million big and small ways. Prince and his siblings are so funny together!
+1
What well spoken and respectful children...great parenting!
Acabo de dar una voltereta
Yeah such amazing sweet parents 😭💗 and the kids are sooo sweet and smart, was sooo happy inside seeing this video 😭💗
@@spartano0096no one asked
well spoken is crazy
@@JaizizziziCompletely unnecessary to be rude.
Prince seems like a really sweet kid! I’m excited to learn how he communicates🫶🏻
I agree
That device is life changing! Glad Prince is able to tell his mom how much he loves her
What a gift for him and everyone who loves him that he is able to communicate with this device! That's invaluable.
I love seeing how far communication devices have come in the last 20 years. There were no iPad programs when my sister received her diagnosis. We carried cards around everywhere until she learned to say enough words to communicate. It was a big binder and it would take so long to find the words she needed that she would give up. Now kiddos get a convenient voice to carry and utilize. It’s amazing.
Prince has the perfect name. There is something very special about his entire family. Wishing them many blessings.
Despite his disability, it’s obvious that he is intelligent and understands what’s going on around him.
All the boys wearing glasses, it's so cute. What a sweet family!
What a wonderful family! Bless Prince’s sister when Chris asked if there was anything complicated about having a brother with a disability; not the answer I thought she was going to give. Most children probably wouldn’t have said it gets in the way of me doing things with my parents, or I can do things with friends sometimes etc. But she is upset she isn’t able to help him without her parents help, if they are alone. My heart.
Thank you so much for your kind comment. Precious is such a lovely and kind sister. She voluntarily helps a lot with Prince.
- Prince’s mom.
@@treasuredkidsfoundationy'all are so blessed to have each other ❤ really beautiful to have gotten to meet you in this video!
I know right
@@treasuredkidsfoundation Mom, you have a beautiful serene presence. Your husband, like you, also is the exact dad a child with a disability needs, as he has a positive attitude. Three great children! As a retired teacher who had profoundly deaf students in class, I can see Prince has the drive and intelligence to do well in life.
I had the same thought, very touching answer.
What an intelligent, nice, great kid Prince is. Thanks for being here, Prince.
That device is one of the most valuable advances in technology in this century. It's absolutely incredible.
When Prince threw his sister a little bit of shade. 😂 She's precious. Both siblings are very mature and compassionate.
What a beautiful family.
🧡🤍🧡🤍🧡
Thanks for your kind words. Sister is indeed precious because that’s her real name😂
- Mom
What a wonderful, loving family. It is so lovely to hear his father saying that he is not overly worried about Prince’s future.
I love Prince's strong ideas. so important that people understand his full personhood.
That dad having such faith is beautiful
Prince is really good at communicating using his device!
His siblings are nice as they make him feel included in activities as it should be!
Really nice parents!
"On 1 to 10 how much do you love your sister?"
Pause
"8"
Made me laugh so hard. Bless this family
I love how Prince has such strong opinions. I am so happy that he has a way to communicate those thoughts and feelings to those around him.
I’m in agreement on clowns. No thank you!
Hey Prince! Your video was a really nice way to get to know you, and it was super awesome to hear from someone else who loves animals as much as me!
I bet you could get involved with animals in a bunch of different careers when you grow up, and I think you’d be fantastic at it. It can be very rewarding work and it’s always interesting-there’s so much to learn.
Also, I died laughing when you said you loved your sister an “8” 🤣🤣🤣
Yeah that was very honest of him and funny too
Yeah me too, hilarious 😂😭💗
Thank you all.
-Prince’s mom
The 8 part had me laughing so hard 😭
i cracked up at the 8/10 too. hugs to Precious, she's obv an amazing sister ❤
He was signing "no" when you mentioned the clown. He is so smart and really good at communicating. What a wonderful interview
This family is so loving, supportive and wonderful. It makes me so emotional to watch this because, even despite the fact that the little boy is living with a disability, the mom and the dad have such a beautiful approach to parenting and having a family and the kids interact in such a supportive wonderful way. ❤
I agree! My new parental role models 🥹
Prince is very intelligent and very sweet and how wonderful that he can communicate with everyone the devices he uses is such a great thing
I wish my sister were nicer to me. I have autism so she doesn’t always understand my thoughts.
I love how Prince can communicates so well with his device and hands gestures!!
This " 8 " was so fun ahahah, I laughed so hard.
It was really interesting that he was able to communicate (and you were able to notice) that he didn’t wanna talk about clowns and pirates. I want to learn sign language (and facial expressions) too!
he's so wonderful. i know that much of this disorder is a struggle i can never comprehend, but i can't get over not being able to blink... how incredibly terrible, i have severe dry eyes and need my eye drops several times a day, i can't imagine. prince is so strong.
Hi, he tries to blink but it’s very mild. We try our best to keep his eyes moist throughout the day.
What a smart young man! Thank you for introducing him to us!
Prince's family seem very loving.
What beautiful and kind-hearted children, both him and his brother.
Hi Prince! Welcome to the SBSK family!❤❤❤
Thanks for the warm welcome.
I cracked up laughing when he gave his sister an 8/10! 😂 And I love that he loves animals. I wonder if he has ever been to the zoo, I feel like he’d enjoy it!
Hi, Prince loves going to the zoo. So far he has been to 3 zoos.
@@treasuredkidsfoundation Excellent!!! 🤩🙌🏾
Chris, thank you for sharing Prince’s story. He has a beautiful, loving family; supportive and kind. I wish all the best for Prince, and for the rest of his family. Much love to you ! 🧡💛❤️💚💙💜
I'm happy that know are captions in portuguese. I'm brazilian and I've saw people here comment about the vídeos of the channel. Those who speak english and knows the channel spread the link on the internet (I know because I saw and I did the same). Now I'm happy to see portuguese subtitles so people here who don't speak english can understand. Thank you so much !!!! 🇧🇷💚💛💙🇧🇷
Omgsh when he said his mom is his favorite person, I smiled so big!!! I feel such a strong bond with my son, so this just melted my heart. My son is non-speaking and uses the same aac device. He doesn’t communicate with it as much as Prince, and it’s been incredible to learn how people can communicate without words!
I have a mild intellectual disability myself and very healthy and independent and kind and sweet and always reaching out to people! One of my classmates sister died so I just called up the Mortuary to relay it message to the family that me and her older sister were Classmates and graduated from high School back in 2012 and that made me feel so good with a tender heart so she doesn't feel feel lonely anymore!!
3:07. Aww I thought he was going to say like 10, or a million. 8 is still pretty good though.
At his age that's a pretty typical brother response, lol. Sister 8 out of 10.
@@hannakinn😂😂 Yep! Very brotherly thing to say. ❤
What a sweet and smart boy you are Prince. I love when Prince said he loved his sister an 8, such a brother number.
What A Champion This Mother Is Beautiful Family.❤
Such a smart and sweet little boy. I have so much respect for Chris also. He is amazing with children and understanding them.
This was a great episode. I am so glad that he is able to communicate. His family is so loving and supportive!
Prince is a handsome man & I would be thrilled to be his friend! He is so smart & sweet! People should accept Prince for who he is. Don't be concerned about why he's different than his brother, sister, etc. Just love him & play with him. Hey Prince! I go to church every Sunday & I love it! I get to see family, friends, & listen to the sermon about Jesus! Rock on, my man! 😊❤😊
Nice to meet you. This is Prince’s mom
Oh my Lanta I love him. What a vibrant soul! 🥹💜💜 Beautiful family too.
Father is right God doesn't give us more then we can handle Prince has a loving family God Bless ❤🙏 😊
This family is so lovely and their children so sweet
Prince is bright and has a sparkle in his eyei wish them all the best🙏❤️
What a beautiful family 💚and this lovely kid is showing so much perseverance and wittiness. I hope, as he moves through life, that more and more people get to love him and learn from him!
Prince and his family rock 😊
Prince is a gifted child to have such a loving and caring family ❤. God Bless the family.
I smiled throughout this entire interview. What a lovely family ❤
It's so sad that anyone with a difference is immediately judged and assumed to be deficient rather than special. We are ALL different and should embrace that! Imagine the frustration you would feel if you woke up tomorrow and couldn't say a word, I'm so glad he has found an alternate voice! I am hearing impaired and sign language has been a blessing for me, every little bit helps!! What a beautiful family! Thank you guys for sharing your lives.
Beautiful, smart, amazing young man, and equally awesome siblings and parents- such a joy seeing Prince together with his wonderful family, surrounded by love and support. It’s also so nice to see such well-mannered, bright, compassionate kids.
Sendin love and blessings to Prince and family from the UK ❤🙏🏼😊
Thanks for your kind words.
- Prince’s mom
as a speech therapist this makes my heart so happy ☺ AAC is up there on my favorite areas to work with!!
I am studying speech therapy right now and I look forward to work with it!
The siblings are always the kindest. ❤
Handsome, smart little dude. He’s a treasure ❤
So much Love in that family and surrounding all around this Beautiful Angel 💕😇 🙏 Hallelujah. And it's impossible for Prince to ever fail in Life with that much Love for him. 😊
This family has such a beautiful relationship with each other and their faith ❤
Prince is a fitting name for such a happy boy 🧡
LOVE LOVE LOVE your interviews!
A sweet kid with a sweet family. You can feel the love they all share.
Beautiful interview and beautiful family. Inspirational.
Awesome interview. Great family
I'm not practising religious, but I've always loved the idea that God would not give a burden to someone that they couldn't handle. So uplifting.
I gave up Christianity because of all the bigots.
No. I do not believe that. You have no choice. You do it because of love.
"I don't wanna go to church"
A... "Burden"???
1:37 warmed my heart, thank you for asking before using the device. It’s his and may feel invasive to use and it’s really great that you asked first, I hope everyone watching this takes notes so they do the same ❤
Happy to see you!❤
The dad is a Nigerian! when he says God won't give me something i can't handle, that's is our power what a lovely family
Thank you for bringing this lovely family to us, Chris ❤️
What a smart boy and sweet family! Thank you for the video! ❤️
Very nice to get to know a little bit about Prince. What a great kid he seems to be. Thanks for another great video.
What a wonderful family! So great to meet you all through this video.
Prince seem like an amazing individual, nice to meet you buddy!!!
The parents are amazing. I luv how the dad said God wouldn't give him nothing he couldn't handle... Luv it... The family is beautiful. Thank u
Two of the sentences (or parts of them) that his mom said really struck me as gorgeous and wonderful. “I want people to learn him” is the first one. You absolutely do learn people and that’s a great way to put it. The second was when she was talking about her son’s AAC device and said her “hearts blesses” the people who created it. My god that is a lovely way to put it. Language fascinates me and the way she speaks is a phenomenal showing of why I love it so much. This whole family is wonderful. 😊
What a beautiful, loving family. Thank you so much for sharing. I’m so glad RUclips is allowing comments under these videos now. These videos are so important.
Thank you for sharing the story of your family with us! You are all beautiful souls with so much love for each other. I wish Prince the best!
I love this channel.
Thank you for your care and compassion.
So beautiful ❤❤❤❤
I love this family!!! Beautiful human beings.
He is so precious and smart thank you for sharing this amazing family with us ❤
God bless this beautiful family. Prince is so expressive and smart kid.
I love when Daddy said “God will not give me what I can’t handle” love this family! Such a beautiful precious family!!! 🙏💙
I love that he signs as well as using a communication device. He has a lot to say and more means to say it!
I've been watching your videos for years. The Lord has surely blessed you in your work. I love seeing how loving these special kids and their families are!
Warms my heart to see his brother help suction him! Sprung right into action ♡
What a beautiful family, Prince you are so loved!!
I would love to hear from Prince and his family again on the channel in the future 😊💞
Much love ♡ ♡ ♡
That kid is so beautiful! So is his brother! I love the glasses and I love that he is unique. Being unique is how you can help change the world
mama & daddy are doing a great job. Such sweet, well spoken kiddos. So loving. I know theyre so proud of every one of them. Bless yall!!
I don't believe I have ever missed one of your videos, I totally love them and all the hard work you do Chris, Now I also really don't think I have ever commented on one, but oh my, I am so so amazed at this one, and I just think not only Prince but also his whole family are so special, and he is so very blessed to have them. So,, thank you for this Chris, for without you, I wouldn't know of all these special people you tape xoxoxo
Loved this! My heart always breaks when someone is born with a disability. But, his parents are AWESOME! - and his siblings. So important.
What a smart boy and a beautiful loving family. Hes lucky to have such a wonderful supportive family.
Beautiful, loving family! ❤
Wonderful kid! Go Prince!
Wonderful family!
Wonderful you, Mr Chris!
Thank you for being such a good connector and advocate, and allowing the people with all kinds of disabilities to be advocates, too!
Love and Blessings to All!
🌟✨💜🌹✨🌟
Some kind of joy and peace after seeing this video. So thankful for Prince and his very beautiful family ❤