Living with an Altered Chromosome (Pitt-Hopkins Syndrome)
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- čas přidán 13. 07. 2024
- Jesse is diagnosed with Pitt-Hopkins syndrome, a condition that alters his 18th chromosome. Although he is nonverbal, Jesse still communicates in many ways.
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I see him back there watching Super Mario Galaxy. That game was my childhood. Honestly, I think the internet is such a great thing because it makes videos of all kinds of games and tv shows available to those who need them to cope. I'm sure being able to dive into another world like that is really important in Jesse's life.
🤗👍🏻👏🏻👏🏽😊😘 Thank you Jacket, you said what I was tripping over. WELL DONE 😘
I also saw him watching veggie tales little Einstein and Sesame Street
"He has a right to say no."
Yes! What a wonderful advocate he has in Mom.
Ikrrrrr
I LOVE how excited Jesse is about reading books and how happy he seems to be playing with Chris. He's such a sweet spirit
I'm glad for him that she said she wants, "quality of life for him." This is so important. It is obvious from his smile and his clapping that he is a happy person.
Wow. Simply wow. My child has this rare syndrome and he is 8 yrs old right now. He is so, so adept at picking up feelings or if someone is down. He doesn't have a huge vocabulary but he understands EVERYTHING said and he is so intuitive with others. His best friend's name happens to be Jesse and i thought that to be a huge coincidence
Can I just praise Chris for his patience & understanding for people who have disabilities he is so thoughtful for the parents & asks appropriate questions without offending them. He is an advocate for people who have disabilities who want to share their experiences to the world. I have autism & 22q11 Deletion Syndrome I have applied to be on this but heard nothing back other than that keep up the good work Chris & Alyssa.
I love learning about the different ways of people can communicate, this is really cool
My son is two and also has Pitt Hopkins. Thank you for sharing this.
Here’s your reminder that you’re doing a great job as a mother ❤️
This channel really shows all the cool ways there are to communicate besides verbal/signing/etc. and it’s super freaking cool. Jesse you are awesome 🤩
I agree.🙂
"Do you like going to music therapy?"... No! 🏃🏻♂️💨*Goes to computer 😂❤️
I love how he did that like he was saying "Listen, I don't even care what you're asking, I'll say 'no', let me go"
I feel it lmaoo
Love him this is sue
Chris you are a very special person. God bless you.
I love Jesse's enthusiasm!
This channel is such a blessing. The "Smile Though Your Heart Is Breaking" story, oh my God. (T_T) That is so sweet.
His smile and excitement is so contagious!
Jesse is such a fun person, so engaged and emotive. He's obviously very bright. His family are the perfect people to help him thrive and it's clear that he has a great life.
Jesse is great! He definitely knows every page of each book and knows when to turn the pages! It looks like he's not paying attention sometimes but he is! It's fantastic.
What an awesome young man, he may not have the words but he sure understand what's going on around him and seems to be such a happy person
Like Jesse, my brother doesn't have speech, he was also blinded at birth. And like Jesse, people who meet my brother a couple of times are always astonished at how much he knows and understands. Great meeting Jesse!
He is beautiful 😊🙏
I just love him ❤
Jessie you are gorgeous 🥰
Love from Perth Western Australia Australia 🇦🇺
The “smile though your heart is breaking” story made me shed a few tears
This has to be literally one of my favorite channels on youtube. I find myself watching so many episodes right after work. This interview was soo good.
Omg I love this kid. All the kids you interview are all soo amazing but I think socializing with this kid would be so unique and such a great experience. Your so lucky to meet such awesome people.
just after few minutes of watching this video, I just feel like I want to be friends with him. I am a nurse and I use to work in Behavioral Health. Its amazing how they can express their feeling to communicate with you in their own unique way.
What a lovely smile he’s awesome
I'm happy that comments are back
Jesse you are the best bro 👌
his family is so lovely!
Look at this man go!
Keep up the awesome things you do for folks like this!!
Gotta respect Chris and the work he does. Such a wholesome channel
Yes!!! Comments are back!!!
11:02 do u like music therapy NO THEN THE WALK OFF 🤣🤣🤣👍🏽HE KEPT IT SO REAL
The mom's comment about his amount of depth, that's unfortunately such a sad fact of life. There are soooo many layers to the human mind, it's easy to think someone doesn't understand things, just because they can't communicate like we expect. It's similar to thinking someone without legs can not get from point A to point B, but they can! It's just their path to get there might be little different, and might take a little longer.
We often forget that with certain disabilities.
Everyone needs to be loved and understood. We all need to try harder to make connections and accommodations for those who need it most.
❤️🙏
I praise this guy for teaching us. I really do. My heart grows each time I watch these videos.
Definitely a teenager. “No.” *walks away
Jesse u r an amazing and sweet guy.
I just want to thankyou for making this show .... I love learning about these beautiful individuals who I think are absolutely amazing
I love your passion in touching these lives bro, it’s very genuine.
Hi everyone: It's so nice to see you all again on CZcams. I hope to meet you all one day. Take care and stay safe.
You want to meet all of the viewers...? Or did you mean you want to meet Chris with SBSK?
@@Chelle8847 Both.
He has such a great personality! 😊
Jessie is a happy boy,he's so exuberant
He repeats everything because he knows the answers and it makes him so very happy! Isn't that a wonderful gift? Imagine if life would be that wonderful for us! His brain does not tell him he just did the same thing and knows the answer....o, he feels like he just A-ced the most difficult test and is beside himself for joy! So he does it again and than he has a new book and it starts all over again. I bet he is exhausted when it is bedtime because he never lets his brain rest!
Awesome!
I adore this kid! He’s incredibly sweet and happy!
Chris is one of a kind his voice is wonderful so clear so everyone can understand love this beautiful soul bless you chris ❤🙏🤝🙏✌️
Oh my god he is so cute. Thank you so much for what you do.
I just love how Jess communicates it makes Me happy!!🤗
Thank You for sharing this with me!!
Jesse absolutely enjoyed it when you were reading his favorite books.. with him, not to him, but together! That's what he's so excited about! I love his energy!
Jesse is such a sweet guy I'd love to hang out with him
Jesse is absolutely good looking and handsome 😍
Great show
There is defenitely dept when his mom says we dont know what is ahead and he Comes to her with a kiss
This is My favorite video!!
God bless them this was so sweet and awesome and God bless you reading this he loves you more than you could ever know Nothing you do NOTHING can make Him love you less
May god be with Jesse and god bless his family and god bless you Chris.
Thank you for sharing
He seems intelligent but very very hyper and anxious!He’s definitely happy and intelligent though.Hopefully he will get treatment to calm his anxiety.
It's possible he just seemed anxious because new people were in his home and it was an exciting experience for him.
@@jacqueeelle6287 True
I love Jessie energy and he is adorable.
What a nice boy! A pure and good soul :)
As pessoas especiais ficam encantadas com você .Elas percebem que o seu interesse nelas é realmente sincero
I love the way he would answer and then push the pad away... 🤣 I can also relate to his love of the computer, I watch a lot of CZcams too.
What a blessing to this world!
He's so adorable omg 😍😭❤
Blues Clues and Super Mario .... POG moment
He is a sweetheart so cute
I really like this guy
my little brother has Pitt Hopkins as well
I love this kid!
Awesome Parents 🤩👍👍👍
the questions I always ask myself when watching these type of video's is what type of existence is this, and is it worth it.
I hope he has a great life
God bless you✨ 💛✨
“Do you like going to music therapy?”
“No!” [leaves]
“Oh, that’s not true!”
🤣😂😅
He seems like a pretty smart kid to me!❤
The song Jesse chosed for his grieving mom impressed me. I always thought that inside any apparently crazy/disabled/mentally rearded person there's a sane person who knows exactly what is going on around them. Only this person can not communicate with the external world, but he's there .. In depth, as mom tell us.
I like his manners.
My man watching Little Einsteins in the background!
honestly until i watched this i never knew that understanding language
being told to you and forming
sentences yourself were entirely unrelated to eachother in the brain. and honestly seeing something like that is sorta cool. mostly everyone in cool in their own sorta way
I used to have a student with this condition.
超可愛
💖💖💖💖
❤❤❤
Love how bro is watching veggie tales, little Einstein and Sesame street in the background
I would love to be Jesse's friend he is very smart
I love to read books magazines papers
What is chromosome reverse? I’ve never heard of this disorder.
I love his energy but I hope that’s now what I think it is that showed up on the computer at 4:11? 🤨😂😭
lol
Super Mario Land 2 - 6 Golden Coins! I'd love to bond with him over that, great game!
Hi Chris my name is John I have cerebral palsy I communicate with my iPad but I can also White sign
Ciaooo ragazzo povero in una malattia tosta però sembra per quello che vedo intelligente però nn posso dire nn conosco la situazione sei un grande ragazzo ti mando un saluto a te e tuo papà ok ciaooo
👍👍
This reminds me of autism.are there any connections?
Hi there! I'm Jesse's sister in the video. This is a great question. For years, he was diagnosed with autism because there were lots of things about him that fit. But there were some things that didn't. It helped him get the services and care he needed as he was growing up though. It wasn't until a year or two before this video that Jesse had genetic testing done and they found his 18th chromosome to be altered. This is how we found about Pitt-Hopkins Syndrome. The discovery of that in itself is fairly new as well, but having the diagnosis now has changed even more for Jesse. Like my mom said, the oldest people we know are in their 40s so there's still more to discover about it.
@@annarose7341 I love Jesse!!! My son is 2. He has PTHS. his TCF4 is mutated. Finn has a lot of similarities. Thank you so much for easing this mamas mind and sharing Jesse.
You sound like Steve when you read!
Me not realizing the blue's clues dog was a female until now...
BUWAHAHAHAHA!!!!!!!😂
🥰🥰🥰
He’s a great looking guy. This just isn’t fair.
lol i could see super mario land 2 on his computer screen
I had no idea there were so many genetically mishaps existed.
Ciaooo bella gente di un canale CZcams di tutto rispetto avanti così ok ciaooo❤
Haha Go Animate Boris go brrr