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

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

[@VelvetTears216]

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]

Did he pass away? 🥺😪

[@kr4t0sg.28]

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

[@pirefilms6460]

​@@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]

Rip to a goat🙏🏾

[@salad2322]

@@jessicabeca1234 a week ago

[@anyashah248]

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

[@adanice49]

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]

Rip

[@haleygaume5063]

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

[@aronlelenora9572]

❤❤❤❤

[@cannedtuna360]

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

[@jobethk588]

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

[@YuBeace]

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]

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]

R.I.P❤🕊 To your husband!

[@happyist3719]

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.

[@LordCowboyCat]

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

[@breezier1291]

He is dead?

[@LordCowboyCat]

@@breezier1291 Yes, he recently passed away.

[@breezier1291]

NOOO

[@craigward7691]

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]

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

[@snics0619]

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

[@uniquepurpose03]

@@snics0619 I know right, smh

[@raydenbartley]

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

[@dolomedestenebrosus9564]

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.

[@HeyGirlHaaay]

SAME!! 😢

[@snowpawprint6492]

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

[@sadieyoung4547]

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]

@@sadieyoung4547 Unfortunately he passed away

[@sadieyoung4547]

@@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]

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

[@StressHaze]

@@nikkisovain9429 sauce ? Bahahahhahahhahah

[@softouji]

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

[@monaalisaa94]

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

[@gunnertlc7728]

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]

I cried too.

[@dorna2325]

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

[@gunnertlc7728]

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

[@holysol]

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]

bruh he died when?

[@RosalieLato-km6mc]

@Saileshbalaji, he died on December 29, 2022

[@RosalieLato-km6mc]

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

[@LittleLegendBaby]

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♥️

[@definitely_not_an_athlete1714]

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

[@jillianoconnell862]

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

[@Tqueenboss1]

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

[@Lumerem]

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

[@maxinepreston7601]

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

[@Leona000]

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

[@bsbznumber1fan]

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]

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.

[@singingmyblue8000]

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. 🖤

[@starlight.6922]

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

[@Brandonlikesbananas]

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.

[@cstpa1]

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

[@supernovaartsyt7014]

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

[@nataligarcia4935]

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]

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]

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

[@lcwinablackdress]

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

[@Visitor2Earth]

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!

[@patshippy7831]

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

[@MeganKugs]

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

[@candaceproud]

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]

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

[@Mix-su4fm]

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.

[@BethRazz]

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.

[@gothgirl76060]

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 👏

[@Opal_jen_X]

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

[@Deluxual]

💙 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..

[@TheCryptKeeper8]

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

[@adrianrincon8766]

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

[@astridx7485]

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

[@amazinamy]

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

[@DetroitFettyghost]

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.

[@hannakinn]

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

[@Chantelle-iz1zd]

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.

[@brendaseager7371]

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.

[@jennyrobinson3574]

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 ❤

[@navygurl4182]

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

[@bobbybrownvevo4748]

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

[@Almondjoi2006]

True. I almost forget he’s 13.

[@jaysonlove5781]

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

[@austin9321]

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.

[@BandoLyrix]

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

[@jitsislife2640]

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!

[@chlonn2cute4u]

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

[@sukhdeepsandhu5885]

Rest in Peace Steven

[@bridget2197]

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.💜

[@lazur1]

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

[@Ullisen]

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

[@liimichh]

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

[@thequeertelope7941]

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

[@frenchibristianbok8847]

REST IN PEACE HONEY 💐❤🙏🏻⚘

[@nessie101]

rest in peace! we will miss you 💕

[@serenatsukino5252]

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

[@AntoniTolwinski]

Rest in Peace, Steven :'(

[@BeeAAAHHH]

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

[@traaaashmouse]

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

[@martyjohnston397]

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

[@jessicabeca1234]

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

[@CarolineMosesComedy]

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

[@Sidsebisse]

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❤

[@alicefryman3372]

Rest in peace , you were inspirational ❤️

[@SushiBurritoPapi]

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

[@yeababywelive5340]

Rest In Peace to this beautiful soul!

[@peter-jamesmmbago8721]

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

[@LinkaBellGAME]

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

[@spham713]

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

[@sandravanderbilt5431]

This interview guy is such a sweetheart

[@raymondmoya4798]

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

[@atheistcrusader1160]

Rip dear friend

[@starwolven]

What a delightful soul! He shined so brightly ❤

[@nicholaslehouillier6880]

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

[@chiefsparks4117]

steve flirting with all the angels rn ❤

[@monicahyland8641]

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

[@chessgenius123]

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

[@block.b]

I still can’t believe he died, rip man

[@jobethk588]

Thank you for supporting Steven's dream.

[@kathyjohnson2043]

Such a wonderful young man. I was so sorry to hear of his passing. I know he was surrounded by love and joy.

[@feint8304]

Rip steven you were a good friend or even one of the best friends…i’m very saddened to hear my homie died i will never forget about the mk days…

[@tessan613]

Sometimes I wish I could give videos a second like when watching it again, now is such a time 😢 May you rest in peace 💕

[@ben7607]

Rest in Peace, Steven.

[@clintwestwood1895]

You are one Cool strong and brave person Steven, Oceans of love from Nevada.

[@darlenearciga7888]

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

[@lorenluxe8816]

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

[@chaotic1437]

R.I.P❤🕊Steven, such a kind and funny soul!

[@GHx5]

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