Living with an Altered Chromosome (Pitt-Hopkins Syndrome)

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  • เผยแพร่เมื่อ 26 ก.ย. 2024

ความคิดเห็น • 128

  • @quartz14girl
    @quartz14girl 2 ปีที่แล้ว +94

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

  • @jacket5456
    @jacket5456 3 ปีที่แล้ว +153

    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 ปีที่แล้ว +4

      🤗👍🏻👏🏻👏🏽😊😘 Thank you Jacket, you said what I was tripping over. WELL DONE 😘

    • @Heretowatchvideos123
      @Heretowatchvideos123 9 หลายเดือนก่อน +1

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

  • @pineappledinosinspace
    @pineappledinosinspace 3 ปีที่แล้ว +105

    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

  • @allinson_sam
    @allinson_sam 2 ปีที่แล้ว +30

    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.

  • @kellanbellchamber6430
    @kellanbellchamber6430 3 ปีที่แล้ว +112

    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 🤩

  • @TheTiayahi
    @TheTiayahi 3 ปีที่แล้ว +144

    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 ปีที่แล้ว +40

    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

  • @alissarmoussa947
    @alissarmoussa947 3 ปีที่แล้ว +166

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

  • @loriepolson7931
    @loriepolson7931 3 ปีที่แล้ว +69

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

  • @jasmineray2149
    @jasmineray2149 2 ปีที่แล้ว +45

    My son is two and also has Pitt Hopkins. Thank you for sharing this.

    • @Kai-eb1fv
      @Kai-eb1fv ปีที่แล้ว +2

      Here’s your reminder that you’re doing a great job as a mother ❤️

  • @Julia-vb3rk
    @Julia-vb3rk 3 ปีที่แล้ว +51

    I love Jesse's enthusiasm!

  • @moissery
    @moissery ปีที่แล้ว +11

    His smile and excitement is so contagious!

  • @beegee80
    @beegee80 3 ปีที่แล้ว +34

    This channel is such a blessing. The "Smile Though Your Heart Is Breaking" story, oh my God. (T_T) That is so sweet.

  • @GeorgiaGeorgette
    @GeorgiaGeorgette 2 ปีที่แล้ว +16

    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.

  • @CrystalCat24
    @CrystalCat24 3 ปีที่แล้ว +24

    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 ปีที่แล้ว +8

    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

  • @pendapalanamundjebo5328
    @pendapalanamundjebo5328 3 ปีที่แล้ว +130

    "Do you like going to music therapy?"... No! 🏃🏻‍♂️💨*Goes to computer 😂❤️

    • @SuperMatyoO
      @SuperMatyoO 2 ปีที่แล้ว +12

      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 ปีที่แล้ว +4

      I feel it lmaoo

    • @michaelbarber4813
      @michaelbarber4813 ปีที่แล้ว +1

      Love him this is sue

  • @brooksrogers1975
    @brooksrogers1975 3 ปีที่แล้ว +21

    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
    @drindy5166 2 ปีที่แล้ว +6

    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 ปีที่แล้ว +7

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

  • @cherylsutherland9464
    @cherylsutherland9464 3 ปีที่แล้ว +20

    He is beautiful 😊🙏
    I just love him ❤
    Jessie you are gorgeous 🥰
    Love from Perth Western Australia Australia 🇦🇺

  • @kadybehmer9966
    @kadybehmer9966 ปีที่แล้ว +7

    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.

  • @jenwillis01
    @jenwillis01 3 ปีที่แล้ว +38

    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.

  • @jacksadowsky6349
    @jacksadowsky6349 3 ปีที่แล้ว +13

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

  • @bucs1015
    @bucs1015 2 ปีที่แล้ว +9

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

  • @yumi-jx5nz
    @yumi-jx5nz 3 ปีที่แล้ว +13

    his family is so lovely!

  • @martinauld670
    @martinauld670 ปีที่แล้ว +2

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

  • @kendra8888
    @kendra8888 2 ปีที่แล้ว +4

    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.

  • @millennialboomer
    @millennialboomer 2 ปีที่แล้ว +5

    Definitely a teenager. “No.” *walks away

  • @Madome230
    @Madome230 2 ปีที่แล้ว +6

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

  • @denisejones3017
    @denisejones3017 3 ปีที่แล้ว +6

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

  • @anattablue
    @anattablue 3 ปีที่แล้ว +17

    Look at this man go!

  • @abdullahak2204
    @abdullahak2204 3 ปีที่แล้ว +9

    He has such a great personality! 😊

  • @shanehess931
    @shanehess931 2 ปีที่แล้ว +2

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

  • @ethanedward9643
    @ethanedward9643 3 ปีที่แล้ว +9

    Yes!!! Comments are back!!!

  • @marleenninaka1303
    @marleenninaka1303 3 ปีที่แล้ว +37

    Hi everyone: It's so nice to see you all again on TH-cam. I hope to meet you all one day. Take care and stay safe.

    • @Chelle8847
      @Chelle8847 2 ปีที่แล้ว +3

      You want to meet all of the viewers...? Or did you mean you want to meet Chris with SBSK?

    • @marleenninaka1303
      @marleenninaka1303 2 ปีที่แล้ว +2

      @@Chelle8847 Both.

  • @junecooper4688
    @junecooper4688 2 ปีที่แล้ว +4

    Jessie is a happy boy,he's so exuberant

  • @eliselaughlin1886
    @eliselaughlin1886 3 ปีที่แล้ว +10

    Jesse u r an amazing and sweet guy.

  • @lets_summini
    @lets_summini ปีที่แล้ว +1

    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!

  • @jnieswartz4878
    @jnieswartz4878 2 ปีที่แล้ว +2

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

  • @ingeborgm6147
    @ingeborgm6147 3 ปีที่แล้ว +28

    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!

  • @jorgealejandro672
    @jorgealejandro672 ปีที่แล้ว +1

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

  • @adair-y6h
    @adair-y6h 5 หลายเดือนก่อน

    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 ปีที่แล้ว +2

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

  • @henriekeschouten1304
    @henriekeschouten1304 2 ปีที่แล้ว +5

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

  • @charlesparrish2831
    @charlesparrish2831 3 ปีที่แล้ว +5

    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 3 ปีที่แล้ว +8

      It's possible he just seemed anxious because new people were in his home and it was an exciting experience for him.

    • @charlesparrish2831
      @charlesparrish2831 3 ปีที่แล้ว +1

      @@jacqueeelle6287 True

  • @MJ69ism
    @MJ69ism 3 ปีที่แล้ว +16

    What a lovely smile he’s awesome

  • @jtag7069
    @jtag7069 3 ปีที่แล้ว +10

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

  • @isaacgarcia8686
    @isaacgarcia8686 9 หลายเดือนก่อน

    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 ปีที่แล้ว +2

    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

  • @corinneweisbein6679
    @corinneweisbein6679 2 ปีที่แล้ว +4

    Jesse is absolutely good looking and handsome 😍

  • @barryretmanski4763
    @barryretmanski4763 2 ปีที่แล้ว +2

    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 TH-cam too.

  • @thelehmi7029
    @thelehmi7029 3 ปีที่แล้ว +7

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

  • @ZackieLovesSalad
    @ZackieLovesSalad 3 ปีที่แล้ว +10

    Awesome!

  • @melwignal
    @melwignal 2 ปีที่แล้ว +1

    I love Jessie energy and he is adorable.

  • @mryoshi1221
    @mryoshi1221 2 ปีที่แล้ว +2

    Blues Clues and Super Mario .... POG moment

  • @dadycreations100
    @dadycreations100 ปีที่แล้ว

    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
    @teags3559 2 ปีที่แล้ว +2

    my little brother has Pitt Hopkins as well

  • @Clydekid
    @Clydekid 2 ปีที่แล้ว +1

    I hope he has a great life

  • @jocelyng7991
    @jocelyng7991 2 ปีที่แล้ว +1

    Thank You for sharing this with me!!

  • @tgees8180
    @tgees8180 3 ปีที่แล้ว +3

    Great show

  • @jocelyng7991
    @jocelyng7991 2 ปีที่แล้ว +2

    This is My favorite video!!

  • @ceciliapessica4317
    @ceciliapessica4317 3 ปีที่แล้ว +4

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

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd ปีที่แล้ว

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

  • @sucompany5924
    @sucompany5924 ปีที่แล้ว +1

    Thank you for sharing

  • @flxmkr
    @flxmkr ปีที่แล้ว +1

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

  • @hashidraws
    @hashidraws 2 ปีที่แล้ว +1

    He's so adorable omg 😍😭❤

  • @sarahawkinsliepke4908
    @sarahawkinsliepke4908 ปีที่แล้ว +1

    I really like this guy

  • @tatianaflores1926
    @tatianaflores1926 ปีที่แล้ว

    What a blessing to this world!

  • @tristantheoofer2
    @tristantheoofer2 ปีที่แล้ว

    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

  • @Alwaysherethere
    @Alwaysherethere 5 หลายเดือนก่อน

    He seems like a pretty smart kid to me!❤

  • @collinlangston6980
    @collinlangston6980 2 ปีที่แล้ว +2

    My man watching Little Einsteins in the background!

  • @pandyjohnson8980
    @pandyjohnson8980 ปีที่แล้ว +1

    He is a sweetheart so cute

  • @bentraeger230
    @bentraeger230 2 ปีที่แล้ว +4

    Awesome Parents 🤩👍👍👍

  • @Heretowatchvideos123
    @Heretowatchvideos123 9 หลายเดือนก่อน

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

  • @Heyymynameisjbells
    @Heyymynameisjbells 2 ปีที่แล้ว +1

    I used to have a student with this condition.

  • @denisereid7048
    @denisereid7048 3 ปีที่แล้ว +5

    This reminds me of autism.are there any connections?

    • @annarose7341
      @annarose7341 2 ปีที่แล้ว +13

      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 ปีที่แล้ว +3

      @@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.

  • @joescaletta9665
    @joescaletta9665 2 ปีที่แล้ว +1

    I love his energy but I hope that’s now what I think it is that showed up on the computer at 4:11? 🤨😂😭

  • @Ap9leJacks-wy3pq
    @Ap9leJacks-wy3pq ปีที่แล้ว

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

  • @johnhenson7581
    @johnhenson7581 2 ปีที่แล้ว +1

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

  • @jackrusselpupper1979
    @jackrusselpupper1979 2 ปีที่แล้ว +2

    I had no idea there were so many genetically mishaps existed.

  • @Alwaysherethere
    @Alwaysherethere ปีที่แล้ว

    I love this kid!

  • @charlesparrish2831
    @charlesparrish2831 3 ปีที่แล้ว +5

    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 2 ปีที่แล้ว

      I also think it is related to Autism, too

  • @MrPillowStudios
    @MrPillowStudios ปีที่แล้ว

    I like his manners.

  • @karencheng8006
    @karencheng8006 2 ปีที่แล้ว +2

    超可愛

  • @Cetrifuga1945
    @Cetrifuga1945 ปีที่แล้ว +1

    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

  • @mikecampos5123
    @mikecampos5123 ปีที่แล้ว

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

  • @MultiDudeman
    @MultiDudeman ปีที่แล้ว

    Super Mario Land 2 - 6 Golden Coins! I'd love to bond with him over that, great game!

  • @brettjames1992
    @brettjames1992 2 ปีที่แล้ว

    I love to read books magazines papers

  • @ms2507
    @ms2507 2 ปีที่แล้ว

    God bless you✨ 💛✨

  • @jocelyng7991
    @jocelyng7991 2 ปีที่แล้ว +2

    💖💖💖💖

  • @Cetrifuga1945
    @Cetrifuga1945 10 หลายเดือนก่อน +1

    Ciaooo bella gente di un canale TH-cam di tutto rispetto avanti così ok ciaooo❤

  • @Clydekid
    @Clydekid 2 ปีที่แล้ว

    You sound like Steve when you read!

  • @randroid4504
    @randroid4504 ปีที่แล้ว

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

  • @jackrusselpupper1979
    @jackrusselpupper1979 2 ปีที่แล้ว

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

  • @corls-vo6tr
    @corls-vo6tr 2 หลายเดือนก่อน +1

    ❤❤❤😊😊😊so cute bo , to be honest

  • @FilmThePoliceFTP
    @FilmThePoliceFTP ปีที่แล้ว

    Was he so excited he was punching his…. With his fists? Yikes.

  • @aronlelenora9572
    @aronlelenora9572 2 ปีที่แล้ว +1

    ❤❤❤

  • @jackrusselpupper1979
    @jackrusselpupper1979 2 ปีที่แล้ว

    Only child?