Living with an Altered Chromosome (Pitt-Hopkins Syndrome)

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  • Опубликовано: 28 ноя 2024

Комментарии • 128

  • @quartz14girl
    @quartz14girl 2 года назад +95

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

  • @pineappledinosinspace
    @pineappledinosinspace 3 года назад +107

    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

  • @jacket5456
    @jacket5456 3 года назад +155

    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 года назад +4

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

    • @Heretowatchvideos123
      @Heretowatchvideos123 11 месяцев назад

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

  • @allinson_sam
    @allinson_sam 2 года назад +31

    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.

  • @quinceyb921
    @quinceyb921 2 года назад +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

  • @kellanbellchamber6430
    @kellanbellchamber6430 3 года назад +113

    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 🤩

  • @jasmineray2149
    @jasmineray2149 2 года назад +45

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

    • @Kai-eb1fv
      @Kai-eb1fv Год назад +2

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

  • @TheTiayahi
    @TheTiayahi 3 года назад +146

    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.

  • @alissarmoussa947
    @alissarmoussa947 3 года назад +167

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

  • @moissery
    @moissery Год назад +11

    His smile and excitement is so contagious!

  • @loriepolson7931
    @loriepolson7931 3 года назад +70

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

  • @GeorgiaGeorgette
    @GeorgiaGeorgette 2 года назад +18

    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 3 года назад +34

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

  • @Julia-vb3rk
    @Julia-vb3rk 3 года назад +52

    I love Jesse's enthusiasm!

  • @mishsana69
    @mishsana69 Год назад +9

    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

  • @CrystalCat24
    @CrystalCat24 3 года назад +26

    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.

  • @drindy5166
    @drindy5166 2 года назад +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 Год назад +8

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

  • @kadybehmer9966
    @kadybehmer9966 2 года назад +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.

  • @brooksrogers1975
    @brooksrogers1975 3 года назад +22

    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!

  • @pendapalanamundjebo5328
    @pendapalanamundjebo5328 3 года назад +132

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

    • @SuperMatyoO
      @SuperMatyoO 2 года назад +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 Год назад +4

      I feel it lmaoo

    • @michaelbarber4813
      @michaelbarber4813 Год назад +1

      Love him this is sue

  • @jacksadowsky6349
    @jacksadowsky6349 3 года назад +13

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

  • @martinauld670
    @martinauld670 Год назад +2

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

  • @cherylsutherland9464
    @cherylsutherland9464 3 года назад +20

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

  • @bucs1015
    @bucs1015 3 года назад +9

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

  • @kendra8888
    @kendra8888 2 года назад +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.

  • @yumi-jx5nz
    @yumi-jx5nz 3 года назад +13

    his family is so lovely!

  • @marleenninaka1303
    @marleenninaka1303 3 года назад +37

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

    • @Chelle8847
      @Chelle8847 2 года назад +3

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

    • @marleenninaka1303
      @marleenninaka1303 2 года назад +2

      @@Chelle8847 Both.

  • @MJ69ism
    @MJ69ism 3 года назад +16

    What a lovely smile he’s awesome

  • @jenwillis01
    @jenwillis01 3 года назад +39

    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.

  • @Madome230
    @Madome230 2 года назад +7

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

  • @denisejones3017
    @denisejones3017 3 года назад +6

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

  • @shanehess931
    @shanehess931 2 года назад +2

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

  • @anattablue
    @anattablue 3 года назад +17

    Look at this man go!

  • @ethanedward9643
    @ethanedward9643 3 года назад +9

    Yes!!! Comments are back!!!

  • @tristantheoofer2
    @tristantheoofer2 Год назад +1

    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

  • @jnieswartz4878
    @jnieswartz4878 2 года назад +2

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

  • @abdullahak2204
    @abdullahak2204 3 года назад +10

    He has such a great personality! 😊

  • @lets_summini
    @lets_summini Год назад +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!

  • @millennialboomer
    @millennialboomer 2 года назад +6

    Definitely a teenager. “No.” *walks away

  • @jorgealejandro672
    @jorgealejandro672 Год назад +1

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

  • @junecooper4688
    @junecooper4688 3 года назад +4

    Jessie is a happy boy,he's so exuberant

  • @ingeborgm6147
    @ingeborgm6147 3 года назад +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!

  • @eliselaughlin1886
    @eliselaughlin1886 3 года назад +10

    Jesse u r an amazing and sweet guy.

  • @jocelyng7991
    @jocelyng7991 2 года назад +2

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

  • @jtag7069
    @jtag7069 3 года назад +10

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

  • @corinneweisbein6679
    @corinneweisbein6679 3 года назад +4

    Jesse is absolutely good looking and handsome 😍

  • @charlesparrish2831
    @charlesparrish2831 3 года назад +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 года назад +9

      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 года назад +1

      @@jacqueeelle6287 True

  • @adair-y6h
    @adair-y6h 7 месяцев назад

    Chris is one of a kind his voice is wonderful so clear so everyone can understand love this beautiful soul bless you chris ❤🙏🤝🙏✌️

  • @barryretmanski4763
    @barryretmanski4763 2 года назад +3

    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 RUclips too.

  • @xenoxboi795
    @xenoxboi795 2 года назад +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

  • @melwignal
    @melwignal 2 года назад +1

    I love Jessie energy and he is adorable.

  • @thelehmi7029
    @thelehmi7029 3 года назад +7

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

  • @henriekeschouten1304
    @henriekeschouten1304 3 года назад +5

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

  • @ZackieLovesSalad
    @ZackieLovesSalad 3 года назад +10

    Awesome!

  • @mryoshi1221
    @mryoshi1221 2 года назад +2

    Blues Clues and Super Mario .... POG moment

  • @isaacgarcia8686
    @isaacgarcia8686 11 месяцев назад

    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.

  • @ceciliapessica4317
    @ceciliapessica4317 3 года назад +4

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

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd 2 года назад

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

  • @dadycreations100
    @dadycreations100 Год назад

    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.

  • @Clydekid
    @Clydekid 2 года назад +1

    I hope he has a great life

  • @tatianaflores1926
    @tatianaflores1926 Год назад

    What a blessing to this world!

  • @hashidraws
    @hashidraws 2 года назад +1

    He's so adorable omg 😍😭❤

  • @jocelyng7991
    @jocelyng7991 2 года назад +1

    Thank You for sharing this with me!!

  • @jocelyng7991
    @jocelyng7991 2 года назад +2

    This is My favorite video!!

  • @tgees8180
    @tgees8180 3 года назад +3

    Great show

  • @teags3559
    @teags3559 2 года назад +2

    my little brother has Pitt Hopkins as well

  • @flxmkr
    @flxmkr 2 года назад +1

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

  • @sarahawkinsliepke4908
    @sarahawkinsliepke4908 2 года назад +1

    I really like this guy

  • @bentraeger230
    @bentraeger230 3 года назад +4

    Awesome Parents 🤩👍👍👍

  • @pandyjohnson8980
    @pandyjohnson8980 2 года назад +1

    He is a sweetheart so cute

  • @Alwaysherethere
    @Alwaysherethere 7 месяцев назад

    He seems like a pretty smart kid to me!❤

  • @sucompany5924
    @sucompany5924 Год назад +1

    Thank you for sharing

  • @Cetrifuga1945
    @Cetrifuga1945 Год назад +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

  • @collinlangston6980
    @collinlangston6980 2 года назад +2

    My man watching Little Einsteins in the background!

  • @Alwaysherethere
    @Alwaysherethere Год назад

    I love this kid!

  • @Heyymynameisjbells
    @Heyymynameisjbells 2 года назад +1

    I used to have a student with this condition.

  • @MrPillowStudios
    @MrPillowStudios Год назад

    I like his manners.

  • @victoriabrown972
    @victoriabrown972 2 года назад +2

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

  • @joescaletta9665
    @joescaletta9665 2 года назад +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? 🤨😂😭

  • @charlesparrish2831
    @charlesparrish2831 3 года назад +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 года назад

      I also think it is related to Autism, too

  • @Heretowatchvideos123
    @Heretowatchvideos123 11 месяцев назад

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

  • @Ap9leJacks-wy3pq
    @Ap9leJacks-wy3pq 2 года назад

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

  • @johnhenson7581
    @johnhenson7581 2 года назад +1

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

  • @denisereid7048
    @denisereid7048 3 года назад +5

    This reminds me of autism.are there any connections?

    • @annarose7341
      @annarose7341 3 года назад +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 года назад +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.

  • @MultiDudeman
    @MultiDudeman Год назад

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

  • @mikecampos5123
    @mikecampos5123 Год назад

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

  • @brettjames1992
    @brettjames1992 2 года назад

    I love to read books magazines papers

  • @ms2507
    @ms2507 2 года назад

    God bless you✨ 💛✨

  • @corls-vo6tr
    @corls-vo6tr 4 месяца назад +1

    ❤❤❤😊😊😊so cute bo , to be honest

  • @karencheng8006
    @karencheng8006 2 года назад +2

    超可愛

  • @jackrusselpupper1979
    @jackrusselpupper1979 2 года назад

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

  • @jocelyng7991
    @jocelyng7991 2 года назад +2

    💖💖💖💖

  • @Clydekid
    @Clydekid 2 года назад

    You sound like Steve when you read!

  • @jackrusselpupper1979
    @jackrusselpupper1979 2 года назад +2

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

  • @randroid4504
    @randroid4504 Год назад

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

  • @Cetrifuga1945
    @Cetrifuga1945 Год назад +1

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

  • @aronlelenora9572
    @aronlelenora9572 2 года назад +1

    ❤❤❤

  • @FilmThePoliceFTP
    @FilmThePoliceFTP Год назад

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