Living with an Altered Chromosome (Pitt-Hopkins Syndrome)

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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Пікірлер: 128

  • @quartz14girl
    @quartz14girl2 жыл бұрын

    "He has a right to say no." Yes! What a wonderful advocate he has in Mom.

  • @ohitsthem7601

    @ohitsthem7601

    Жыл бұрын

    Ikrrrrr

  • @jacket5456
    @jacket54563 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

    8 ай бұрын

    I also saw him watching veggie tales little Einstein and Sesame Street

  • @pineappledinosinspace
    @pineappledinosinspace3 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
    @TheTiayahi3 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
    @quinceyb9212 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

  • @allinson_sam
    @allinson_sam2 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.

  • @alissarmoussa947
    @alissarmoussa9473 жыл бұрын

    I love learning about the different ways of people can communicate, this is really cool

  • @kellanbellchamber6430
    @kellanbellchamber64303 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
    @pendapalanamundjebo53283 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

  • @jasmineray2149
    @jasmineray21492 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 ❤️

  • @Julia-vb3rk
    @Julia-vb3rk3 жыл бұрын

    I love Jesse's enthusiasm!

  • @loriepolson7931
    @loriepolson79313 жыл бұрын

    Chris you are a very special person. God bless you.

  • @beegee80
    @beegee802 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.

  • @GeorgiaGeorgette
    @GeorgiaGeorgette2 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.

  • @moissery
    @moissery Жыл бұрын

    His smile and excitement is so contagious!

  • @CrystalCat24
    @CrystalCat242 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
    @brooksrogers19752 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!

  • @drindy5166
    @drindy51662 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.

  • @Kai-eb1fv
    @Kai-eb1fv Жыл бұрын

    The “smile though your heart is breaking” story made me shed a few tears

  • @jenwillis01
    @jenwillis013 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.

  • @cherylsutherland9464
    @cherylsutherland94643 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.

  • @jacksadowsky6349
    @jacksadowsky63493 жыл бұрын

    I'm happy that comments are back Jesse you are the best bro 👌

  • @MJ69ism
    @MJ69ism3 жыл бұрын

    What a lovely smile he’s awesome

  • @yumi-jx5nz
    @yumi-jx5nz3 жыл бұрын

    his family is so lovely!

  • @kendra8888
    @kendra88882 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.

  • @martinauld670
    @martinauld670 Жыл бұрын

    Gotta respect Chris and the work he does. Such a wholesome channel

  • @anattablue
    @anattablue3 жыл бұрын

    Look at this man go!

  • @bucs1015
    @bucs10152 жыл бұрын

    Keep up the awesome things you do for folks like this!!

  • @shanehess931
    @shanehess9312 жыл бұрын

    I love your passion in touching these lives bro, it’s very genuine.

  • @Madome230
    @Madome2302 жыл бұрын

    11:02 do u like music therapy NO THEN THE WALK OFF 🤣🤣🤣👍🏽HE KEPT IT SO REAL

  • @denisejones3017
    @denisejones30172 жыл бұрын

    I just want to thankyou for making this show .... I love learning about these beautiful individuals who I think are absolutely amazing

  • @ethanedward9643
    @ethanedward96433 жыл бұрын

    Yes!!! Comments are back!!!

  • @user-wu8ey2sd9m
    @user-wu8ey2sd9m3 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 ❤🙏🤝🙏✌️

  • @marleenninaka1303
    @marleenninaka13033 жыл бұрын

    Hi everyone: It's so nice to see you all again on KZread. 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.

  • @jnieswartz4878
    @jnieswartz48782 жыл бұрын

    I adore this kid! He’s incredibly sweet and happy!

  • @jorgealejandro672
    @jorgealejandro672 Жыл бұрын

    Oh my god he is so cute. Thank you so much for what you do.

  • @ingeborgm6147
    @ingeborgm61473 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!

  • @junecooper4688
    @junecooper46882 жыл бұрын

    Jessie is a happy boy,he's so exuberant

  • @abdullahak2204
    @abdullahak22043 жыл бұрын

    He has such a great personality! 😊

  • @eliselaughlin1886
    @eliselaughlin18863 жыл бұрын

    Jesse u r an amazing and sweet guy.

  • @jocelyng7991
    @jocelyng79912 жыл бұрын

    I just love how Jess communicates it makes Me happy!!🤗

  • @jocelyng7991
    @jocelyng79912 жыл бұрын

    Thank You for sharing this with me!!

  • @millennialboomer
    @millennialboomer2 жыл бұрын

    Definitely a teenager. “No.” *walks away

  • @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!

  • @xenoxboi795
    @xenoxboi7952 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

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd Жыл бұрын

    May god be with Jesse and god bless his family and god bless you Chris.

  • @tgees8180
    @tgees81802 жыл бұрын

    Great show

  • @jocelyng7991
    @jocelyng79912 жыл бұрын

    This is My favorite video!!

  • @sucompany5924
    @sucompany5924 Жыл бұрын

    Thank you for sharing

  • @melwignal
    @melwignal2 жыл бұрын

    I love Jessie energy and he is adorable.

  • @barryretmanski4763
    @barryretmanski47632 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 KZread too.

  • @ZackieLovesSalad
    @ZackieLovesSalad3 жыл бұрын

    Awesome!

  • @isaacgarcia8686
    @isaacgarcia86868 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.

  • @thelehmi7029
    @thelehmi70292 жыл бұрын

    What a nice boy! A pure and good soul :)

  • @charlesparrish2831
    @charlesparrish28312 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

  • @jtag7069
    @jtag70693 жыл бұрын

    Jesse is such a sweet guy I'd love to hang out with him

  • @ceciliapessica4317
    @ceciliapessica43172 жыл бұрын

    As pessoas especiais ficam encantadas com você .Elas percebem que o seu interesse nelas é realmente sincero

  • @tatianaflores1926
    @tatianaflores1926 Жыл бұрын

    What a blessing to this world!

  • @corinneweisbein6679
    @corinneweisbein66792 жыл бұрын

    Jesse is absolutely good looking and handsome 😍

  • @hashidraws
    @hashidraws2 жыл бұрын

    He's so adorable omg 😍😭❤

  • @henriekeschouten1304
    @henriekeschouten13042 жыл бұрын

    There is defenitely dept when his mom says we dont know what is ahead and he Comes to her with a kiss

  • @Clydekid
    @Clydekid2 жыл бұрын

    I hope he has a great life

  • @sarahawkinsliepke4908
    @sarahawkinsliepke4908 Жыл бұрын

    I really like this guy

  • @pandyjohnson8980
    @pandyjohnson8980 Жыл бұрын

    He is a sweetheart so cute

  • @Alwaysherethere
    @Alwaysherethere3 ай бұрын

    He seems like a pretty smart kid to me!❤

  • @mryoshi1221
    @mryoshi12212 жыл бұрын

    Blues Clues and Super Mario .... POG moment

  • @bentraeger230
    @bentraeger2302 жыл бұрын

    Awesome Parents 🤩👍👍👍

  • @Alwaysherethere
    @Alwaysherethere Жыл бұрын

    I love this kid!

  • @dadycreations100
    @dadycreations10010 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.

  • @teags3559
    @teags35592 жыл бұрын

    my little brother has Pitt Hopkins as well

  • @ms2507
    @ms25072 жыл бұрын

    God bless you✨ 💛✨

  • @flxmkr
    @flxmkr Жыл бұрын

    “Do you like going to music therapy?” “No!” [leaves] “Oh, that’s not true!” 🤣😂😅

  • @MrPillowStudios
    @MrPillowStudios Жыл бұрын

    I like his manners.

  • @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

  • @Heyymynameisjbells
    @Heyymynameisjbells2 жыл бұрын

    I used to have a student with this condition.

  • @Heretowatchvideos123
    @Heretowatchvideos1238 ай бұрын

    Love how bro is watching veggie tales, little Einstein and Sesame street in the background

  • @collinlangston6980
    @collinlangston69802 жыл бұрын

    My man watching Little Einsteins in the background!

  • @johnhenson7581
    @johnhenson75812 жыл бұрын

    Hi Chris my name is John I have cerebral palsy I communicate with my iPad but I can also White sign

  • @mikecampos5123
    @mikecampos5123 Жыл бұрын

    I would love to be Jesse's friend he is very smart

  • @karencheng8006
    @karencheng80062 жыл бұрын

    超可愛

  • @brettjames1992
    @brettjames1992 Жыл бұрын

    I love to read books magazines papers

  • @joescaletta9665
    @joescaletta96652 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
    @jocelyng79912 жыл бұрын

    💖💖💖💖

  • @Cetrifuga1945
    @Cetrifuga194510 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

  • @jackrusselpupper1979
    @jackrusselpupper19792 жыл бұрын

    What is chromosome reverse? I’ve never heard of this disorder.

  • @aronlelenora9572
    @aronlelenora95722 жыл бұрын

    ❤❤❤

  • @denisereid7048
    @denisereid70483 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.

  • @Ap9leJacks-wy3pq
    @Ap9leJacks-wy3pq Жыл бұрын

    He’s a great looking guy. This just isn’t fair.

  • @Clydekid
    @Clydekid2 жыл бұрын

    You sound like Steve when you read!

  • @randroid4504
    @randroid4504 Жыл бұрын

    lol i could see super mario land 2 on his computer screen

  • @victoriabrown972
    @victoriabrown9722 жыл бұрын

    Me not realizing the blue's clues dog was a female until now...

  • @SUPERSPAZD

    @SUPERSPAZD

    Жыл бұрын

    BUWAHAHAHAHA!!!!!!!😂

  • @bigsarge2085
    @bigsarge20852 жыл бұрын

    👍👍

  • @corls-vo6tr
    @corls-vo6tr11 күн бұрын

    ❤❤❤😊😊😊so cute bo , to be honest

  • @Cetrifuga1945
    @Cetrifuga19459 ай бұрын

    Ciaooo bella gente di un canale KZread di tutto rispetto avanti così ok ciaooo❤

  • @williamking2371
    @williamking23712 жыл бұрын

    🥰🥰🥰

  • @charlesparrish2831
    @charlesparrish28312 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