The Boy Whose Body is Growing too Fast for his Bones (Marfan Syndrome)

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  • เผยแพร่เมื่อ 5 ส.ค. 2024
  • Steven is diagnosed with Marfan and Beals syndrome. As a result his body is growing faster than his frame can support. At 13 years old he is 7 feet tall, blind and unable to walk.
    SBSK Patreon: / sbsk
    Steven's Channel:
    / @steventt2821
    SBSK's Socials:
    / specialbooksbyspecialkids
    / chrisulmer
    / specialbooksbyspecialkids
    / sbsk

ความคิดเห็น • 415

  • @VelvetTears216
    @VelvetTears216 2 ปีที่แล้ว +827

    Rest In Peace Steven. I also have Marfan syndrome and it pains me to see that you’ve passed at such a young age. Sending prayers to your family. You will be missed.

    • @jessicabeca1234
      @jessicabeca1234 2 ปีที่แล้ว +16

      Did he pass away? 🥺😪

    • @kr4t0sg.28
      @kr4t0sg.28 2 ปีที่แล้ว +40

      Wait what!! Oh man this is my first time seeing this and he had already passed away .

    • @pirefilms6460
      @pirefilms6460 2 ปีที่แล้ว +17

      ​@@kr4t0sg.28 literally same bro i am so sad i was so hyped to go look at all his content and the first video i see on his channel was from the 30th his fam explaining he passed

    • @thinkfiend
      @thinkfiend 2 ปีที่แล้ว +6

      Rip to a goat🙏🏾

    • @salad2322
      @salad2322 2 ปีที่แล้ว

      @@jessicabeca1234 a week ago

  • @adanice49
    @adanice49 2 ปีที่แล้ว +693

    Rest In Peace Steven. I’m grateful to have watched this interview when it released and subscribed to your channel since then. I’m sorry I didn’t make more time to watch your videos

    • @dingdong896
      @dingdong896 2 ปีที่แล้ว +6

      Rip

    • @haleygaume5063
      @haleygaume5063 2 ปีที่แล้ว +1

      Ugh hey posted a stream 8 days ago? I’m confused.

    • @aronlelenora9572
      @aronlelenora9572 2 ปีที่แล้ว +2

      ❤❤❤❤

    • @cannedtuna360
      @cannedtuna360 2 ปีที่แล้ว +2

      OMFG NOOO 😭😭😭😭 Rip beautiful boy! 🕊️👑❤️

  • @jobethk588
    @jobethk588 2 ปีที่แล้ว +132

    What a good-natured boy with a great sense of humor. R.I.P. Steven.

  • @anyashah248
    @anyashah248 2 ปีที่แล้ว +270

    Rest In Peace Steven, you were loved by many, and won’t be forgotten

  • @YuBeace
    @YuBeace ปีที่แล้ว +47

    Man I can’t imagine how empty it must feel for his family now that he’s gone. I hope they can find comfort and happiness with eachother.

  • @sadieyoung4547
    @sadieyoung4547 2 ปีที่แล้ว +50

    My husband just passed from his marfan syndrome. He'd survived his first 2 heart surgeries and an aneurysm but didn't make it through this last surgery a couple weeks ago. He was a fighter like all the others! Miss him so much!

    • @chaotic1437
      @chaotic1437 11 หลายเดือนก่อน +3

      R.I.P❤🕊 To your husband!

  • @snowpawprint6492
    @snowpawprint6492 3 ปีที่แล้ว +356

    0:16 "It's a bomb! No just kidding!"
    LOL! Steven is so funny!

    • @sadieyoung4547
      @sadieyoung4547 3 ปีที่แล้ว +13

      My 38 year old husband with marfan and a mechanical heart valve uses the same joke... I hope he can have just as successful a life telling the same joke for many years just as my husband has Haha

    • @nikkisovain9429
      @nikkisovain9429 2 ปีที่แล้ว +6

      @@sadieyoung4547 Unfortunately he passed away

    • @sadieyoung4547
      @sadieyoung4547 2 ปีที่แล้ว +6

      @@nikkisovain9429 that's so sad! I've got 2 very important marfan folks in my life. My husband and my youngest step daughter. Such a variable disease but definitely one that needs the visibility and continued research.

    • @nikkisovain9429
      @nikkisovain9429 2 ปีที่แล้ว +4

      @@sadieyoung4547 I do agree. I wish you and your family the best.

    • @StressHaze
      @StressHaze 2 ปีที่แล้ว

      @@nikkisovain9429 sauce ?
      Bahahahhahahhahah

  • @happyist3719
    @happyist3719 2 ปีที่แล้ว +71

    I laughed so hard when I first saw him and his little brother, such an amazing bond. But immediately after I saw the comments that he had passed...
    Rest in peace Steven. The world is so lucky to have been granted this little peek into your life and mind, we wish your time could have been longer.

  • @craigward7691
    @craigward7691 3 ปีที่แล้ว +428

    He's so well spoken, jovial and seems wholly unfazed by his illness, A shining example for all 13 year olds......nay.....for ALL of us

    • @snowypaw101
      @snowypaw101 3 ปีที่แล้ว +8

      I'm 15 and I try to live my life as happy as possible :D

    • @snics0619
      @snics0619 2 ปีที่แล้ว +6

      It's so crazy that he's gone! Sucks that he didn't find love an youtube "fandom". 😔

    • @uniquepurpose03
      @uniquepurpose03 2 ปีที่แล้ว +2

      @@snics0619 I know right, smh

    • @raydenbartley
      @raydenbartley ปีที่แล้ว +1

      @@snowypaw101 most people do. You’re not doing anything special, just living normally

  • @dolomedestenebrosus9564
    @dolomedestenebrosus9564 2 ปีที่แล้ว +67

    Oh my god. I just watched this video for the first time and then saw the comments that he recently passed away and it felt like a stab in my chest. I was really touched by his sweetness and intelligence in this video. He was obviously a very contemplative, curious and smart kid with a great sense of humour and a beautiful heart, and my heart breaks for his family. I am so sorry for the loss of this very special young person. Rest in peace Steven.

  • @gunnertlc7728
    @gunnertlc7728 2 ปีที่แล้ว +115

    I havent cried in a while but I am crying right now. Little homie passed a couple weeks ago. Just found out. I dont follow this channel but still followed him. I am gutted. Straight gutted.

    • @awesome_danimal
      @awesome_danimal 2 ปีที่แล้ว +3

      I cried too.

    • @dorna2325
      @dorna2325 2 ปีที่แล้ว +1

      I am also really sad about it. would you mind if i ask you how you found out?

    • @gunnertlc7728
      @gunnertlc7728 2 ปีที่แล้ว +9

      @@dorna2325 His family posted on his personal youtube channel. Steven T T is the name I believe.

  • @LordCowboyCat
    @LordCowboyCat 2 ปีที่แล้ว +116

    Rest in Peace, Steven. I hope the other side treats you like the star you are.

    • @breezier1291
      @breezier1291 2 ปีที่แล้ว +3

      He is dead?

    • @LordCowboyCat
      @LordCowboyCat 2 ปีที่แล้ว +3

      @@breezier1291 Yes, he recently passed away.

    • @breezier1291
      @breezier1291 2 ปีที่แล้ว +4

      NOOO

  • @softouji
    @softouji 2 ปีที่แล้ว +44

    What an old soul. He had an incredible personality. Rest in Peace

  • @holysol
    @holysol ปีที่แล้ว +25

    I had the pleasure of calling Steven my friend - I wouldn't say we were super close, but I was there in his streams, I was there in his discord server, we PMd each other back and forth, we played a couple of sessions of D&D, and we'd scheduled more. Unfortunately he passed before we were able to complete a campaign. But to this day, I still think about him. He'll not be forgotten. Rest in peace, dude, we still out here.

    • @SaileshBalaji
      @SaileshBalaji ปีที่แล้ว

      bruh he died when?

    • @RosalieLato-km6mc
      @RosalieLato-km6mc ปีที่แล้ว

      @Saileshbalaji, he died on December 29, 2022

    • @RosalieLato-km6mc
      @RosalieLato-km6mc ปีที่แล้ว

      I think, I don't know since it was four years ago

  • @monaalisaa94
    @monaalisaa94 2 ปีที่แล้ว +36

    My heart hurts to know you’re no longer here with us. R.I.P ❤️

  • @LittleLegendBaby
    @LittleLegendBaby 2 ปีที่แล้ว +66

    Rest easy and without pain, Steven. I came back to this interview and remembered how much I adored hearing him speak. His energy, his smile, everything… an absolute joy to the world. A casanova, comedian, and a real kind soul. His faith and religion, though different from mine, is inspiring. He finds love and acceptance in his heart.
    I sincerely offer condolences to his friends and family in this time of grief. But I like to think that Steven lived a great and fulfilled life, no matter its length. All of my love♥️

  • @Leona000
    @Leona000 2 ปีที่แล้ว +82

    And now he's in the arms of Jesus. Prayers for the family

  • @jillianoconnell862
    @jillianoconnell862 2 ปีที่แล้ว +42

    I couldn't decide which of Steve's one-liners to put here. He. Is. Hilarious.

  • @definitely_not_an_athlete1714
    @definitely_not_an_athlete1714 2 ปีที่แล้ว +49

    Rest in peace Steve ❤. He was such a kind and jovial guy . Life didn't deserve such a pure angel .

  • @Tqueenboss1
    @Tqueenboss1 3 ปีที่แล้ว +38

    He has a really good heart. Through everything he has the most positive attitude, I strive to be like that.

  • @maxinepreston7601
    @maxinepreston7601 2 ปีที่แล้ว +33

    Rest in peace sweet boy. Condolences to his family. 😞

  • @starlight.6922
    @starlight.6922 2 ปีที่แล้ว +46

    Hes one of the people that have stuck with me the most from all of your videos, especially since how kindhearted and funny he is. Knowing he passed breaks my heart, rest in peace you kind soul, you were loved and had a huge impact

  • @Lumerem
    @Lumerem 2 ปีที่แล้ว +24

    Rest In Peace Steven. You were such a positive soul for this world. My heart is heavy knowing you’re no longer with us. ❤️

  • @singingmyblue8000
    @singingmyblue8000 3 ปีที่แล้ว +30

    That's one smart young boy. I'd LOVE to be a friend of his! He sounds so kind and fun to be with. Hope he's safe. 🖤

  • @Visitor2Earth
    @Visitor2Earth 2 ปีที่แล้ว +13

    When I was a pre-teen, the docs thought I had Marfan syndrome. Turns out, I am just long and lanky and I sprouted up too fast for my chest cavity to keep up! Now, decades later, I'm still long and lanky...and love it!

  • @cstpa1
    @cstpa1 2 ปีที่แล้ว +9

    wow i watched the whole thing and then saw the comments :( so sorry for your loss. steven had great character

  • @bsbznumber1fan
    @bsbznumber1fan 2 ปีที่แล้ว +37

    I came back to this interview as i wanted to watch it again to see steven and his huge heart. I heard about his passing and wanted to send my deepest condolences to his family. Steven was so funny and kind and always flirting with those girls lol nothing wrong with that. Steven was a kindhearted person who was living his life as best as he could. Rest in peace my friend you will always be in our hearts.

  • @adamrie3484
    @adamrie3484 2 ปีที่แล้ว +22

    Steven my guy, RIP, prayers to you and your family. You were a chill dude here on earth and I wish I coulda chilled w you, played some games, talked, do whatever but I know we woulda had a good time.

  • @supernovaartsyt7014
    @supernovaartsyt7014 ปีที่แล้ว +12

    Rest in peace Steven. You were loved and you have an amazing sense of humor!

  • @Brandonlikesbananas
    @Brandonlikesbananas 2 ปีที่แล้ว +19

    Rest In Peace, Steven. ❤️ I vividly remembered his interview because of his beautiful personality. Brought me to tears at work when I saw he passed. God bless his family.

  • @patshippy7831
    @patshippy7831 3 ปีที่แล้ว +49

    What a great sense of humor! And he seems mature for his age

  • @Opal_jen_X
    @Opal_jen_X 3 ปีที่แล้ว +53

    Steve, you are an awesome person with an awesome sense of humor. 😆💙

  • @nataligarcia4935
    @nataligarcia4935 2 ปีที่แล้ว +16

    It’s so sad to hear that he passed. May he rest peacefully. I find it amazing to see the similarities between families. I see these boys and their mom and it reminds me of my boys and myself. It goes to show how there’s not much difference between families who deal with a variety of different challenges and our own. These individuals are so much more than their sicknesses and they can very well be our sons, daughters, moms and dads.

  • @lolly5453
    @lolly5453 2 ปีที่แล้ว +16

    My thoughts and prayers are with Stevens mom, family, friends and loved ones. He will continue to live on in the hearts of all of the people he touched with his beautiful spirit, and his memory will never be far away.
    Rest in peace, lovely Steven 🙏🏼❤️🕊

  • @gmartinezz3886
    @gmartinezz3886 2 ปีที่แล้ว +16

    Rest In Peace Steven 🥺 You’re in a better place now 🙏🏻❤️

  • @lcwinablackdress
    @lcwinablackdress 2 ปีที่แล้ว +13

    I certainly hope Steven knew how worthy and LOVED he was! ❤️

  • @gothgirl76060
    @gothgirl76060 3 ปีที่แล้ว +22

    Steven you are absolutely wonderful and have a great sense of humor. My father also has Marfan's syndrome and learning about him and his life while growing up has been inspiring. How your voice is being heard and informing others is incredibly inspiring especially with your loving supportive family, thank you 👏

  • @adrianrincon8766
    @adrianrincon8766 2 ปีที่แล้ว +11

    "fight me and I'll show you!" Such a power move right there! Love ya Steve!

  • @Mix-su4fm
    @Mix-su4fm 2 ปีที่แล้ว +10

    So sad to hear the news. I'm glad he went in peace, sleeping. He was a kind soul. We should all subscribe to his channel to fulfill his dream and his family wishes. Rest in peace.

  • @candaceproud
    @candaceproud 3 ปีที่แล้ว +11

    What a good big brother. They are so cute together. The mom seems so warm and loving. It's so nice to see such a close family. 😌

  • @nattenyonglaor9584
    @nattenyonglaor9584 3 ปีที่แล้ว +16

    He is so likeable. What a smart, funny, and sweet bky

  • @thequeertelope7941
    @thequeertelope7941 2 ปีที่แล้ว +4

    "it's a bomb... just kidding"
    "fight me and i'll show you"
    what a LEGEND

  • @navygurl4182
    @navygurl4182 2 ปีที่แล้ว +3

    I'm laughing at him and his little brother. It tickled me so bad when he talked about bugs.😁

  • @MeganKugs
    @MeganKugs 2 ปีที่แล้ว +10

    All my love to Steven and his family. I hope you find consolation. Steven’s legacy and spirit will always be with us all. 💜

  • @brendaseager7371
    @brendaseager7371 ปีที่แล้ว +2

    Oh I am so sorry for your loss. I just read the comments and seen he had past. My heart breaks for him and his family. R I P Steven.

  • @lazur1
    @lazur1 3 ปีที่แล้ว +41

    It's fascinating that there's enough aural information in video games to play them blind.

  • @astridx7485
    @astridx7485 2 ปีที่แล้ว +14

    I can't believe it. It's not fair. Rip Steve❤

  • @Deluxual
    @Deluxual 2 ปีที่แล้ว +14

    💙 R.I.P. Steven - what a wonderful soul you are!! You deserve all the love in the world & more!! My condolences to the family during this difficult time..

  • @BethRazz
    @BethRazz 2 ปีที่แล้ว +12

    Had to come back and rewatch his video. ❤️❤️ I remember he made me smile so much. RIP Steven you touched so many people's lives! I'll remember you forever.

  • @amazinamy
    @amazinamy 2 ปีที่แล้ว +12

    R.I.P Steven. Such a wonderful and sweet guy. My condolences to his family.

  • @bobbybrownvevo4748
    @bobbybrownvevo4748 2 ปีที่แล้ว +10

    R.I.P man. You had such a mature, powerful voice. Sounded like a grown man

    • @Almondjoi2006
      @Almondjoi2006 6 หลายเดือนก่อน

      True. I almost forget he’s 13.

  • @BandoLyrix
    @BandoLyrix 2 ปีที่แล้ว +3

    I swear to God, I like this guy. I binge watch these videos but i end up sad but appreciative of all life

  • @TheCryptKeeper8
    @TheCryptKeeper8 2 ปีที่แล้ว +5

    So sorry you're gone buddy... Definitely not forgotten. My heart is with you Steve's mum, family and friends.

  • @traaaashmouse
    @traaaashmouse 2 ปีที่แล้ว +9

    He's got such a good sense of humor lol. Seems like a really cool kid

  • @martyjohnston397
    @martyjohnston397 7 หลายเดือนก่อน +1

    I love him man. Rest in peace please. You didn’t deserve the life you were given but you still smiled through it

  • @hannakinn
    @hannakinn 2 ปีที่แล้ว +7

    RIP so sorry you died so young. You were an awesome young man. It was obvious that your family loved you very much.

  • @jaysonlove5781
    @jaysonlove5781 2 ปีที่แล้ว +6

    Rest in peace to such an amazing young man. I wish peace and healing for his family. 😥💔

  • @liimichh
    @liimichh 2 ปีที่แล้ว +6

    Still can’t believe he passed away he was so nice Rest In Peace Steven

  • @sukhdeepsandhu5885
    @sukhdeepsandhu5885 2 ปีที่แล้ว +9

    Rest in Peace Steven

  • @ikz8439
    @ikz8439 ปีที่แล้ว +6

    he’s just 13? how is he so eloquent 👏👏👏

  • @bridget2197
    @bridget2197 2 ปีที่แล้ว +16

    I enjoyed this episode with Steven..it might be one of my favorites because of how much I smiled and laughed..he has such a sweet and smart personality. God bless Steven and his family.💜

  • @DetroitFettyghost
    @DetroitFettyghost 2 ปีที่แล้ว +3

    Steve. Rest in Peace my sweet brother. My heart aches for you and your family but I know your in a better day then we are. Thank you for the wonderful interview you gave the world we can go back and watch it anytime. Much love.

  • @Chantelle-iz1zd
    @Chantelle-iz1zd 2 ปีที่แล้ว +4

    Rip 🙏🏾 your light is shining from above. I feel like your still with us. You was so amazing, you lived a wonderful life and your legacy will live on.

  • @BeeAAAHHH
    @BeeAAAHHH 2 ปีที่แล้ว +3

    Rest In Peace 💖 bright bright soul and talented kid. All of us, the subscribers, will remember you.

  • @austin9321
    @austin9321 2 ปีที่แล้ว +5

    Rest In Peace Steven, you really are an amazing guy. You will be remembered, you definitely changed me with this interview, I will always appreciate that.

  • @jitsislife2640
    @jitsislife2640 2 ปีที่แล้ว +3

    Steven, u made your dream of being a youtuber and now, in the next life, you will be able to travel with your lovely wife and take turns driving and living a wonderful life of freedom and adventure. U inspire me to keep dreaming and live each day to the fullest. Thank you God for Chris and his partner, SBSK and the community, and all the wonderful individuals we get to meet through your wonderful interviews and videos. God bless us all!

  • @Ullisen
    @Ullisen 2 ปีที่แล้ว +4

    Rest in peace, "BFG" 💜 Such a kind soul, and such a loss. My sincere condolences and love to this amazing family 💜

  • @jennyrobinson3574
    @jennyrobinson3574 2 ปีที่แล้ว +5

    Rest in peace Steve what a amazing young man you were. And the love your family have for you is beautiful. Sending so much love ❤

  • @svendontgive5615
    @svendontgive5615 2 ปีที่แล้ว +5

    I love his Sense of Humour. "There is a Bomb inside of me" That is the kinda dark humour i love

  • @chlonn2cute4u
    @chlonn2cute4u 2 ปีที่แล้ว +6

    So sorry to hear about his passing. Absolutely loved his interview ♥️♥️♥️♥️♥️

  • @peter-jamesmmbago8721
    @peter-jamesmmbago8721 ปีที่แล้ว +2

    Oh man, I never knew Steven passed...RIP.. A cool dude with a smashing sense of humor :)

  • @chiefsparks4117
    @chiefsparks4117 2 ปีที่แล้ว +2

    steve flirting with all the angels rn ❤

  • @LinkaBellGAME
    @LinkaBellGAME 2 ปีที่แล้ว +3

    Heard the news he passed away, what a beautiful and gentle soul. Rest in Peace Steven

  • @nikkoleadams4677
    @nikkoleadams4677 2 ปีที่แล้ว +3

    Haha “It’s a BOMB-No, just kidding!” 😂 My man, you are amazing!

    • @nikkoleadams4677
      @nikkoleadams4677 2 ปีที่แล้ว

      Just saw the updates in the comment section. I am so sorry this hilarious man is not with us any longer. I love you, Steven. I’ll remember you.

  • @monicahyland8641
    @monicahyland8641 2 ปีที่แล้ว +2

    I’m so sorry to hear about his passing he looked like the happiest kid in the world.

  • @nessie101
    @nessie101 2 ปีที่แล้ว +4

    rest in peace! we will miss you 💕

  • @SushiBurritoPapi
    @SushiBurritoPapi 2 ปีที่แล้ว +7

    Rest In Peace brother. Hopefully one day I can meet you.

  • @AntoniTolwinski
    @AntoniTolwinski 2 ปีที่แล้ว +2

    Rest in Peace, Steven :'(

  • @block.b
    @block.b 2 ปีที่แล้ว +2

    I still can’t believe he died, rip man

  • @atheistcrusader1160
    @atheistcrusader1160 2 ปีที่แล้ว +3

    Rip dear friend

  • @frenchibristianbok8847
    @frenchibristianbok8847 2 ปีที่แล้ว +9

    REST IN PEACE HONEY
    💐❤🙏🏻⚘

  • @ben7607
    @ben7607 2 ปีที่แล้ว +2

    Rest in Peace, Steven.

  • @sandravanderbilt5431
    @sandravanderbilt5431 3 ปีที่แล้ว +4

    This interview guy is such a sweetheart

  • @serenatsukino5252
    @serenatsukino5252 2 ปีที่แล้ว +6

    Rest in peace Steven. You're a great guy who will be missed

  • @jessicabeca1234
    @jessicabeca1234 2 ปีที่แล้ว +7

    Loved him as soon as he talked
    Such a cool a funny young guy 🙂

  • @jobethk588
    @jobethk588 2 ปีที่แล้ว +2

    Thank you for supporting Steven's dream.

  • @alicefryman3372
    @alicefryman3372 2 ปีที่แล้ว +6

    Rest in peace , you were inspirational ❤️

  • @raymondmoya4798
    @raymondmoya4798 2 ปีที่แล้ว +1

    What a beautiful young man ! May you rest in peace Steven. God bless you and your family ! 🙏❤

  • @Sidsebisse
    @Sidsebisse 2 ปีที่แล้ว +2

    Rest in peace sweet steven. I am really sorry that you had to pass, this young. Buy you undoubtedly made a big impact on many people❤

  • @chessgenius123
    @chessgenius123 2 ปีที่แล้ว +1

    I subscribed to him the first few days when this came out. Rest in peace steven. Your videos were funny and fun to watch

  • @yeababywelive5340
    @yeababywelive5340 2 ปีที่แล้ว +4

    Rest In Peace to this beautiful soul!

  • @CarolineMosesComedy
    @CarolineMosesComedy 4 หลายเดือนก่อน +1

    He has such a great personality! RIP, Steve. ❤️

  • @spham713
    @spham713 2 ปีที่แล้ว +2

    My condolences to your family and friends...what a angel on earth now in heaven.

  • @starwolven
    @starwolven ปีที่แล้ว +1

    What a delightful soul! He shined so brightly ❤

  • @lorenluxe8816
    @lorenluxe8816 2 ปีที่แล้ว +2

    This was such a great interview 👏 he made me smile and laugh.

  • @nicholaslehouillier6880
    @nicholaslehouillier6880 2 ปีที่แล้ว

    Steven is an amazing individual I wish only the best for him I hope you succeed at all your life goals I support you anyway I can

  • @amir_hamzah
    @amir_hamzah 2 ปีที่แล้ว +8

    So wholesome; from The comments I know something sad happens in the end. But he and his family are beautiful.

  • @GHx5
    @GHx5 2 ปีที่แล้ว +2

    Here after hearing the unexpected news. Rest in Peace Steven. You were a loving kind boy

  • @darlenearciga7888
    @darlenearciga7888 ปีที่แล้ว

    I LOVE YOU STEVEN
    Youre still an inspiration even to those seeing this for the first time
    your sense of humor is wonderful ❤

  • @michael00700
    @michael00700 2 ปีที่แล้ว +3

    Such a mature young man