Living with an Altered Chromosome (Pitt-Hopkins Syndrome)

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Special Books by Special Kids

Special Books by Special Kids

Күн бұрын

Jesse is diagnosed with Pitt-Hopkins syndrome, a condition that alters his 18th chromosome. Although he is nonverbal, Jesse still communicates in many ways.
SBSK's Socials:
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Пікірлер: 128
@quartz14girl
@quartz14girl 2 жыл бұрын
"He has a right to say no." Yes! What a wonderful advocate he has in Mom.
@ohitsthem7601
@ohitsthem7601 Жыл бұрын
Ikrrrrr
@jacket5456
@jacket5456 2 жыл бұрын
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.
@pinkpanther2288
@pinkpanther2288 2 жыл бұрын
🤗👍🏻👏🏻👏🏽😊😘 Thank you Jacket, you said what I was tripping over. WELL DONE 😘
@Heretowatchvideos123
@Heretowatchvideos123 7 ай бұрын
I also saw him watching veggie tales little Einstein and Sesame Street
@pineappledinosinspace
@pineappledinosinspace 3 жыл бұрын
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
@TheTiayahi
@TheTiayahi 3 жыл бұрын
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.
@quinceyb921
@quinceyb921 2 жыл бұрын
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
@Julia-vb3rk
@Julia-vb3rk 3 жыл бұрын
I love Jesse's enthusiasm!
@alissarmoussa947
@alissarmoussa947 3 жыл бұрын
I love learning about the different ways of people can communicate, this is really cool
@kellanbellchamber6430
@kellanbellchamber6430 3 жыл бұрын
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 🤩
@christopherhubbard256
@christopherhubbard256 2 жыл бұрын
I agree.🙂
@pendapalanamundjebo5328
@pendapalanamundjebo5328 3 жыл бұрын
"Do you like going to music therapy?"... No! 🏃🏻‍♂️💨*Goes to computer 😂❤️
@SuperMatyoO
@SuperMatyoO 2 жыл бұрын
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"
@ohitsthem7601
@ohitsthem7601 Жыл бұрын
I feel it lmaoo
@michaelbarber4813
@michaelbarber4813 Жыл бұрын
Love him this is sue
@allinson_sam
@allinson_sam 2 жыл бұрын
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.
@jasmineray2149
@jasmineray2149 2 жыл бұрын
My son is two and also has Pitt Hopkins. Thank you for sharing this.
@Kai-eb1fv
@Kai-eb1fv Жыл бұрын
Here’s your reminder that you’re doing a great job as a mother ❤️
@moissery
@moissery Жыл бұрын
His smile and excitement is so contagious!
@loriepolson7931
@loriepolson7931 3 жыл бұрын
Chris you are a very special person. God bless you.
@GeorgiaGeorgette
@GeorgiaGeorgette 2 жыл бұрын
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.
@beegee80
@beegee80 2 жыл бұрын
This channel is such a blessing. The "Smile Though Your Heart Is Breaking" story, oh my God. (T_T) That is so sweet.
@CrystalCat24
@CrystalCat24 2 жыл бұрын
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.
@mishsana69
@mishsana69 Жыл бұрын
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
@brooksrogers1975
@brooksrogers1975 2 жыл бұрын
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!
@Kai-eb1fv
@Kai-eb1fv Жыл бұрын
The “smile though your heart is breaking” story made me shed a few tears
@jenwillis01
@jenwillis01 3 жыл бұрын
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.
@drindy5166
@drindy5166 2 жыл бұрын
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.
@cherylsutherland9464
@cherylsutherland9464 3 жыл бұрын
He is beautiful 😊🙏 I just love him ❤ Jessie you are gorgeous 🥰 Love from Perth Western Australia Australia 🇦🇺
@kadybehmer9966
@kadybehmer9966 Жыл бұрын
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.
@yumi-jx5nz
@yumi-jx5nz 3 жыл бұрын
his family is so lovely!
@MJ69ism
@MJ69ism 3 жыл бұрын
What a lovely smile he’s awesome
@jacksadowsky6349
@jacksadowsky6349 3 жыл бұрын
I'm happy that comments are back Jesse you are the best bro 👌
@martinauld670
@martinauld670 Жыл бұрын
Gotta respect Chris and the work he does. Such a wholesome channel
@anattablue
@anattablue 3 жыл бұрын
Look at this man go!
@bucs1015
@bucs1015 2 жыл бұрын
Keep up the awesome things you do for folks like this!!
@millennialboomer
@millennialboomer 2 жыл бұрын
Definitely a teenager. “No.” *walks away
@kendra8888
@kendra8888 2 жыл бұрын
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.
@shanehess931
@shanehess931 2 жыл бұрын
I love your passion in touching these lives bro, it’s very genuine.
@ethanedward9643
@ethanedward9643 3 жыл бұрын
Yes!!! Comments are back!!!
@Madome230
@Madome230 2 жыл бұрын
11:02 do u like music therapy NO THEN THE WALK OFF 🤣🤣🤣👍🏽HE KEPT IT SO REAL
@junecooper4688
@junecooper4688 2 жыл бұрын
Jessie is a happy boy,he's so exuberant
@denisejones3017
@denisejones3017 2 жыл бұрын
I just want to thankyou for making this show .... I love learning about these beautiful individuals who I think are absolutely amazing
@marleenninaka1303
@marleenninaka1303 3 жыл бұрын
Hi everyone: It's so nice to see you all again on KZfaq. I hope to meet you all one day. Take care and stay safe.
@Chelle8847
@Chelle8847 2 жыл бұрын
You want to meet all of the viewers...? Or did you mean you want to meet Chris with SBSK?
@marleenninaka1303
@marleenninaka1303 2 жыл бұрын
@@Chelle8847 Both.
@abdullahak2204
@abdullahak2204 2 жыл бұрын
He has such a great personality! 😊
@ingeborgm6147
@ingeborgm6147 3 жыл бұрын
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!
@eliselaughlin1886
@eliselaughlin1886 3 жыл бұрын
Jesse u r an amazing and sweet guy.
@jnieswartz4878
@jnieswartz4878 2 жыл бұрын
I adore this kid! He’s incredibly sweet and happy!
@lets_summini
@lets_summini Жыл бұрын
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!
@user-wu8ey2sd9m
@user-wu8ey2sd9m 3 ай бұрын
Chris is one of a kind his voice is wonderful so clear so everyone can understand love this beautiful soul bless you chris ❤🙏🤝🙏✌️
@jocelyng7991
@jocelyng7991 2 жыл бұрын
Thank You for sharing this with me!!
@jocelyng7991
@jocelyng7991 2 жыл бұрын
I just love how Jess communicates it makes Me happy!!🤗
@jorgealejandro672
@jorgealejandro672 Жыл бұрын
Oh my god he is so cute. Thank you so much for what you do.
@henriekeschouten1304
@henriekeschouten1304 2 жыл бұрын
There is defenitely dept when his mom says we dont know what is ahead and he Comes to her with a kiss
@jtag7069
@jtag7069 3 жыл бұрын
Jesse is such a sweet guy I'd love to hang out with him
@tgees8180
@tgees8180 2 жыл бұрын
Great show
@barryretmanski4763
@barryretmanski4763 2 жыл бұрын
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 KZfaq too.
@melwignal
@melwignal 2 жыл бұрын
I love Jessie energy and he is adorable.
@charlesparrish2831
@charlesparrish2831 2 жыл бұрын
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.
@jacqueeelle6287
@jacqueeelle6287 2 жыл бұрын
It's possible he just seemed anxious because new people were in his home and it was an exciting experience for him.
@charlesparrish2831
@charlesparrish2831 2 жыл бұрын
@@jacqueeelle6287 True
@corinneweisbein6679
@corinneweisbein6679 2 жыл бұрын
Jesse is absolutely good looking and handsome 😍
@jocelyng7991
@jocelyng7991 2 жыл бұрын
This is My favorite video!!
@JonathanHernandez-mm3nd
@JonathanHernandez-mm3nd Жыл бұрын
May god be with Jesse and god bless his family and god bless you Chris.
@ZackieLovesSalad
@ZackieLovesSalad 3 жыл бұрын
Awesome!
@tatianaflores1926
@tatianaflores1926 Жыл бұрын
What a blessing to this world!
@isaacgarcia8686
@isaacgarcia8686 7 ай бұрын
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.
@xenoxboi795
@xenoxboi795 2 жыл бұрын
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
@mryoshi1221
@mryoshi1221 2 жыл бұрын
Blues Clues and Super Mario .... POG moment
@sucompany5924
@sucompany5924 Жыл бұрын
Thank you for sharing
@hashidraws
@hashidraws 2 жыл бұрын
He's so adorable omg 😍😭❤
@Clydekid
@Clydekid 2 жыл бұрын
I hope he has a great life
@thelehmi7029
@thelehmi7029 2 жыл бұрын
What a nice boy! A pure and good soul :)
@sarahawkinsliepke4908
@sarahawkinsliepke4908 Жыл бұрын
I really like this guy
@ceciliapessica4317
@ceciliapessica4317 2 жыл бұрын
As pessoas especiais ficam encantadas com você .Elas percebem que o seu interesse nelas é realmente sincero
@teags3559
@teags3559 2 жыл бұрын
my little brother has Pitt Hopkins as well
@flxmkr
@flxmkr Жыл бұрын
“Do you like going to music therapy?” “No!” [leaves] “Oh, that’s not true!” 🤣😂😅
@dadycreations100
@dadycreations100 10 ай бұрын
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.
@Alwaysherethere
@Alwaysherethere 3 ай бұрын
He seems like a pretty smart kid to me!❤
@Alwaysherethere
@Alwaysherethere Жыл бұрын
I love this kid!
@pandyjohnson8980
@pandyjohnson8980 Жыл бұрын
He is a sweetheart so cute
@bentraeger230
@bentraeger230 2 жыл бұрын
Awesome Parents 🤩👍👍👍
@tristantheoofer2
@tristantheoofer2 Жыл бұрын
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
@collinlangston6980
@collinlangston6980 2 жыл бұрын
My man watching Little Einsteins in the background!
@ms2507
@ms2507 2 жыл бұрын
God bless you✨ 💛✨
@MrPillowStudios
@MrPillowStudios Жыл бұрын
I like his manners.
@Heyymynameisjbells
@Heyymynameisjbells 2 жыл бұрын
I used to have a student with this condition.
@Heretowatchvideos123
@Heretowatchvideos123 7 ай бұрын
Love how bro is watching veggie tales, little Einstein and Sesame street in the background
@karencheng8006
@karencheng8006 2 жыл бұрын
超可愛
@mikecampos5123
@mikecampos5123 Жыл бұрын
I would love to be Jesse's friend he is very smart
@brettjames1992
@brettjames1992 Жыл бұрын
I love to read books magazines papers
@joescaletta9665
@joescaletta9665 2 жыл бұрын
I love his energy but I hope that’s now what I think it is that showed up on the computer at 4:11? 🤨😂😭
@ettaoudianas6748
@ettaoudianas6748 2 жыл бұрын
lol
@MultiDudeman
@MultiDudeman Жыл бұрын
Super Mario Land 2 - 6 Golden Coins! I'd love to bond with him over that, great game!
@jocelyng7991
@jocelyng7991 2 жыл бұрын
💖💖💖💖
@victoriabrown972
@victoriabrown972 2 жыл бұрын
Me not realizing the blue's clues dog was a female until now...
@SUPERSPAZD
@SUPERSPAZD Жыл бұрын
BUWAHAHAHAHA!!!!!!!😂
@johnhenson7581
@johnhenson7581 2 жыл бұрын
Hi Chris my name is John I have cerebral palsy I communicate with my iPad but I can also White sign
@Cetrifuga1945
@Cetrifuga1945 10 ай бұрын
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
@Ap9leJacks-wy3pq
@Ap9leJacks-wy3pq Жыл бұрын
He’s a great looking guy. This just isn’t fair.
@aronlelenora9572
@aronlelenora9572 2 жыл бұрын
❤❤❤
@jackrusselpupper1979
@jackrusselpupper1979 2 жыл бұрын
What is chromosome reverse? I’ve never heard of this disorder.
@denisereid7048
@denisereid7048 3 жыл бұрын
This reminds me of autism.are there any connections?
@annarose7341
@annarose7341 2 жыл бұрын
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.
@jasmineray2149
@jasmineray2149 2 жыл бұрын
@@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.
@Clydekid
@Clydekid 2 жыл бұрын
You sound like Steve when you read!
@bigsarge2085
@bigsarge2085 2 жыл бұрын
👍👍
@jackrusselpupper1979
@jackrusselpupper1979 2 жыл бұрын
I had no idea there were so many genetically mishaps existed.
@williamking2371
@williamking2371 2 жыл бұрын
🥰🥰🥰
@randroid4504
@randroid4504 Жыл бұрын
lol i could see super mario land 2 on his computer screen
@corls-vo6tr
@corls-vo6tr 2 сағат бұрын
❤❤❤😊😊😊so cute bo , to be honest
@charlesparrish2831
@charlesparrish2831 2 жыл бұрын
It’s interesting to see this young man communicate,but sad to see that he has to be like this.He seems anxious and almost like he has ADHD.I guess that’s one of the symptoms of his chromosomal abnormality.
@lexie2134
@lexie2134 Жыл бұрын
I also think it is related to Autism, too
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