A Kid with a Deadly and Invisible Disease (Barth Syndrome)
Vložit
- čas přidán 30. 05. 2024
- Connor is diagnosed with a deadly and mostly invisible disease known as Barth syndrome. This genetic condition weakens every muscle in his body including the heart. Connor wants his friends to know that there is a reason he struggles to keep up while playing.
Learn more about Barth syndrome at www.barthsyndrome.org/
Support SBSK at / sbsk
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
Connor is 1 of about 300 people in the world known to have Barth syndrome. When a disease is that rare, it is difficult to secure funding for research. You can learn more about Barth syndrome and even make a contribution to research at www.barthsyndrome.org/
❤❤❤❤
Thank you for doing what you do
Bro you have the best channel on CZcams
Good to know 👍
@@aronlelenora9572 Connor is a total hoot! Love him🥰
"I do not sing and it is certainly not annoying" this kid is funny. Great personalities both of them. They compliment each other.
He is, and after that part I really felt for him because he loves his brother so much and knowing one day he won't have him is so sad. They are both such great kids and I feel for those parents a lot!
@@TheKatarinaGiselle me too!
@@TheKatarinaGiselle Me three ! I hope their parents are proud of what a good job they have done.
literally looking for that quote
That part was amazing 😂 also later when he rates how much he likes him 7/10 Ryan cracked me up 😂
"Be nice to your kids."
I don't think he knows just how many parents need to hear that. What a gentle and kind soul. I hope he gets as much out of life as physically possible.
yeah but parents cant buy their kids everything they wany
@@becuzy *want
Yes
@@becuzy buying things has nothing to do with being nice?
@@IHaveAFatherButHesAbroad It was clearly a typo
These two boys are sooo well-spoken! Ryan's elocution and vocabulary are out of this world
That jumped out at me too. I'd like to hear him sing!
They’re 8 and 11, they talk like normal kids.
not really. they have a normal vocabulary for a 11 and 8 year old kid.
@@possumperson471 idk the kids you've met but certainly some of the 8 year olds I knew when I was an 8 year old could barely string a grammatically correct sentence together, let alone actually understand and articulate their feelings in an eloquent way
@@user-jb1mb5xh9t america
“Just take your time cause you know you’ll be there.”
Definitely an old soul, sending you all so much love & well wishes.
True.
He's 8, not old
@@MarcustheKid2K exactly, old soul. Not actually old.
The kid is so mature
He is wise.
Can I just appreciate wiseness of 8yo Ryan? The way he said, it is important to tell others about his brothers disease, so that more scientists know about it too and they can find the cure for him?! It amused me
They're both charming, sweet & bright kids. Connor has a slick sense of humor, too!
that part made me tear up a slight bit, he's such a sweet kid
It's rather astounding than amusing.
Unfortunately due to the rarity of this disorder there will likely not be any significant treatment for it anytime soon. Still hoping for his safety.
so smart!
Please do more videos about disabilities that you can't see by just looking at a person. She touched on one aspect of it which was people sometimes assuming he's being lazy. That's just the tip of the iceberg, especially when some has a condition that can't be seen & is undiagnosed or difficult to diagnose. Many times these people suffer from mental abuse even from their own family for many years.
My son has an invisible disease too, so it's easy for people to just judge him.
People still judge those with disabilities that are visually apparent as lazy... Ableism really knows no bounds, unfortunately. 🤣
I have EDS. I can get so fatigued some days. Its invisible too.
Yes! I'd like that👀😳💝💐🦋
I have 1type diabetes and am disabled too
“She made me.” The ultimate compliment! He’s such a sweet, gentle soul, and this family is so supportive. It takes a strong kid to live with this serious disease. You’re so smart and amazing, Connor!
Lol cause he is white hu? Lmao 🤣
I found incredibly sweet when he thought for a bit before saying that. You can see he really meant "she gave me life" but he chose his words in a simple childish way.
Me too, it made me a little bit teary 🥹
@@cherrycherrylady1700 Troll
Exactly!! I felt a bit bad when the mother felt he should have said more. That is THE ultimate compliment to give to your mother...
His brothers little voice is so cute 🥺 super articulate and sweet. I'm sure he's had to grow up a little faster than others in order to learn empathy with his brother.
I mean he is 8 right, normal speech for an 8 year old
@@noway5529 not really, a lot of kids have speech impediments/ don't talk super clear. I can barely understand the average 8 yr old because they either talk quiet, talk too fast, mumble, have child like accents etc
@@noway5529 not really, at least in my experience, kids talk in strange ways that are somewhat difficult to understand
@@ElvenSailor_Main is this the same country where its normal for 4 and 5 year olds to not be able to read and write?
That's exactly what happened there. It was shocking to see him so open, kind, and empathetic
Little brother is so incredibly smart! They both are! Sweet kids💜
And Connor said he was only in 2nd grade which blows my mind.
True.
His little brother seems very intelligent. They’re adorable
@@nourishmentality1916 what the heck dude?
@@nourishmentality1916 what is wrong with you
"Just take your time 'cause you know you'll be there" 💚
THE BEST part!!🤗
Connor has so much wisdom. Such a nice boy 💗
The little brother is so adorable and Connor has a good sense of humor. Such a shame that he has this awful disease 😢
Both my boys have barths. One of the hardest things to hear is "they look so normal" hidden disease is hard. I had to remind myself that people aren't trying to invalidate what my boys go through, they just don't have the knowledge of the disease. Thank you for spending the word! You go Connor!
Parents should never have to say goodby to their children I lost my son 6 years ago, my heart goes out to all struggling here, you are so not alone.
"nice, friendly, and kind...that's what you have to be to have a friend". Oh, my heart! 💯💯
Loved the little argument about the singing. What a sweet relationship they have, aww. Beautiful family ❤️
I loved their little glances to each other after they answered a question.
with their little smiles
Jesus Christ is the way let him in your life amen Joh Aaron burrows
I wanted to know what his singing was like! 😀
Dear Connor, I think I have an inkling of what you’re going through. I have had heart failure since I was 13, due to a complex heart defect. I also have an injury to my diaphragm so I’m extremely short winded. As a kid I was lethargic and had low stamina. It doesn’t sound like my issues are as fundamentally tiring as yours are, but I knew similar limitations all the same. Against all odds, I’m 50 years old now, still tired but still going. I want you to know that medicine is changing every day. What is not possible now may be entirely possible in your lifetime. Hang in there. Live your life. It’s the only one you’ve got.
👍👍👍
Kind thing of you to say, God bless you and Connor’s family.
Bless you for this post. I hope Connor recieves it and. I hope it gives him the comfort he deserves. Sweet boy indeed. And you are a wonderful human Cornbread Oracle.
Prayers you feel better
Lord these 2 little boys need a blessing , people have to treasure there family and life God bless them luv ur luv ones !!
Hey Connor. I have congenital heart disease . I had opened heart surgery when I was 5. I'm 52 now...shhhhh I know...I'm old. HAHA I've never heard of Barth syndrome until watching your story. You can be anything you want. You know your body better then anyone else. DON'T PUSH YOURSELF! You have loving parents and a loving big little brother. Life may bring ups and downs at times but we always get through them. By the way, I agree with you. school bites. LOL Keep on being who you are my man. Don't let stuff get you down. and if you're down I always watch cartoons. Preferably Buggs Bunny. Keep the Faith my man..
One of the best comments I've ever read.
I really hope Connor sees what you've written to him!
Love to you and yours.
W comment, W person, W commenter
This made me happy
I'm really wishing this young man and his lovely family a good future. I don't know how his parents are so brave about their situation. The constant, daily dread that something will happen, that this is it, this is the moment our son dies in our arms, I just can't even comprehend how much of a struggle their lives are because of that hovering over their heads. Seriously, I genuinely, _really_ hope this young man can overcome his struggles.
They are "so brave" because they don't have any other choice... You grow with your tasks and responsibilities. They definitely did a great job with their kids 👍
@Mark Green I feel the exact same way; prayerful that Connor can overcome his condition.
You can’t just overcome a genetic disorder. That would be like telling someone to overcome down syndrome. I agree with your sentiment, and I wish this lovely family a good future as well. A part of that might be excepting and expecting the inevitable, and appreciating the time they have together. Not waiting for him to ‘overcome’ his disorder. You learn to cope. I hope they can find happiness, even given the circumstances. Connor is such a brave young man, And not just for having a ultra rare genetic disorder. For making his mom smile. And his dad. For sticking up for himself when he can’t run as fast. Or letting his brother know when he needs to go a little easier on him. Or being able to sit in front of a camera and tell the truth. I’m sure he’s bored out of his mind. What 11-year-old boy doesn’t countdown the seconds till they’re chasing each other around on the playground? Maybe it’s his circumstance, but the maturity and bravery in this kid is unprecedented. If you can’t overcome, you can still survive and thrive, and this family is such a beautiful example.
@@juliajohnson1557 Unfortunately, unless there’s a cure, you cannot ‘overcome’ a genetic disorder.
@@ConnyWeirdWorld brave does not only mean choosing a path out of your will but also includes choosing not to give up, even internally. If this is not brave at the very least it's resourceful or loving
A month ago, I had a patient in the pediatrics ICU that had Barth's syndrome, in fact, it was a friend's son. There were physicians that didn't even know what it is since it's so rare, my patient needed urgently a heart transplant and was connected to ECMO, he was waiting medical supplies from Germany so we can connect him to the Berlin Heart, but the weather condition in Spain slowed everything (they had a heat wave). He was connected for one week and then the right ventricle and atrium collapsed, we tried to do a cardiac catheterization so we can open the septum again so the blood could pass to the right ventricle, but it was too late, he died at the young age of 1 year, the case destroyed me emotionally to this day, and every time I remember it, it brings tears to my eyes, I don't know if it's because a friend is involved or it was just hard for me watching a young child that in pics was so beautiful but in the ICU was so swollen, even though he was extremely sedated, sometimes he would just cry with no sound because he had a tube in his throat that helped him breathe.
It's just a nightmare to remember and I can't take that from my mind.
Thank you all that read till the end.
I can't imagine the weight and sadness that puts on your heart. Take comfort knowing you tried your best. I will remember your story and I too will feel sad with you whenever I think of it. I'm so sorry you went through that. Thank you for helping him and all you do.
Bless you and the family. You were a child's comfort in the hardest of times. Be proud of yourself for being strong enough to handle it and stay in your career.
You did your very best for him. Being a doctor is tough because of these cases where you can't do enough to save a life, but you should be proud of your commitment to medicine.
Dude… this is heavy stuff. I’m hugging you and so sorry
That is heartbreaking. There are so many unique things going on in nature. Some of them are beautiful and others are devestating.
These kids and their parents are SO articulate, intelligent, and well-spoken! They are amazing ambassadors for sharing and spreading awareness about Barth’s syndrome and they certainly deserve all the love, support, and happiness the world has to offer. I wish them every second of happiness together!
His little brother has one of the most adorable voices I’ve ever heard
I can agree.
"he'll always play with you." is so meaningful and sweet
You may not fully understand this until you’re a bit older, but you’re very fortunate Connor. A kind father and a good brother are things not everyone gets to experience, so be sure to appreciate the good things that come your way in life ^_^
Lovely sentiment, & so true.
and great mother!
@@alexmaylef yup
What about his mom?
Mom is a pretty calm spoken nice woman herself. ... I'm guessing you think all mom's are?
You can tell this young man has been through a lot. When I hear someone describe someone as “an old soul” I know that just means he’s been through trauma. Barth syndrome is no joke, it’s debilitating and draining physically and mentally. He’s an incredibly strong kid that has been through more than any of us can imagine.
He seems to be a wonderful big brother. Also, I love his ears. Ears are under-rated on people, and those are awesome.
Fuck yeah
Your ears could have been pointed like Vulcans. Cdr. Trip Tucker on "Enterprise" was played by a Connor Trinneer and Trip's friend is Cdr. T'Pol (Jolene Blalock). My last name is Connor and I'm not only a Trekkie, but part Irish too and love Border Collies.
Haha, I love ears too
I'm sure he can fly with those ears like Dumbo
His little brother is clearly incredibly smart!
Yeah more articulate then a lot of adults. Both parents are very well spoken also so you can see where it comes from.
This made me want to call my brother and tell him I’m lucky to have him
Well, do it !
Because my brother died of cancer aged 20 and with me being only 12 I didn’t have the presence of mind to tell him .
Yes, because you are very lucky to have a good brother. He is lucky to have you, as well. ❤
It’s been over a decade since my older brother disowned our family. Over a decade of radio silence.
If you love your brother, let him know.
They are very smart kids. The youngest is shockingly smart. So incredible. God Bless this family.
Connor is so smart, and his little brother is just…so precious and sweet. Bless these two. Connor is such a handsome, well spoken, intelligent young man and I wish him a happy life.
Precious and sweet AND incredibly smart. They're both smart but the little brother is smarter if you take into consideration that he's just 8. At 11 he'll be incredibly smart and mature.
It’s great we get to hear about these rare syndromes or diseases that we would probably not know about without this channel and we also get to meet some awesome families like this one.
Connor has such a beautiful smile.
Aw, this boy is so incredibly sweet and beautiful! Both children are just wonderful, so handsome, witty and well-spoken. I am absolutely smitten by this beautiful family.
Go Connor!!! I have EDS and grew up in Finland where all public sectors just shame you for being 'lazy' for literally not being able to keep up. Thank you so much for bringing up the topic of being gentle and kind to children, Connor. You're such a friggin champ and I KNOW you'll go places. What a lovely family.
American with EDS and a similar cultural work ethic
Grind 24/7 or you’re “lazy” and “a weight on society” I kid you not
EDS here too, and it's the same in England. If I could make a healthy person feel how I feel on a GOOD day for 5 mins, they'd understand why I struggle to do basic things
Thinking really takes a LOT of energy. A lot of people don't understand just how hard it is to even formulate sentences when experiencing fatigue. Thank you for making this video, Connor, and sharing information with the world, and I hope you and your brother have a lot of laughter and not too many arguments!
yeah i'm kinda worried about the whole full time school thing... i understand they want him to reach his fullest potential but i would rather him go part-time to save his energy for the things he actually enjoys doing, like hobbies even if it's just playing video games.
As someone with an uncommon invisible disorder, I wanna say that this dude is very strong. At 11, he's trying his best, and the way he can articulate his condition is amazing. Keep on fighting dude ❤️
What is Invisible disorder?
@@izzymuzy as in a disorder that isn't physically visible or physically expressed. My personal example is my immune disorder. Nobody really knows that I have it if I didn't tell them.
@@clickslefttoe ok, thank you!
@@izzymuzy ofc!
@@clickslefttoe 😋
Awe so precious. Nice, friendly and kind. You are definitely that young man.
@Hello there, how are you doing this blessed day?
His brother is so very wise beyond his years, too. Both of these boys are old, beautiful souls. ❤
I love these kids so much. The innocence, the positivity, the energy. They are so mature and we'll spoken for their age. They are hilarious and adorable. Connor please have a great life, you are a champ! And Ryan you are a star! 🌟 Good luck to you all, stay strong 🙏
The energy, kinda ironic.
He is so cute, he reminds me of my grandson. My grandson was very sick when he was born, he has a small heart only has one lung which is scarred, this causes him to be limited in what he can do. Him, like you, is so amazing and gentle and I think he is so special. I know you will have a good life and likely end up passing everyone else in the race. Take care.
@Hello there, how are you doing this blessed day?
Both Connor and his brother are so well spoken for such young kids!
God please bless this family with health and love. Sweet boys
Connor and his brother are kind and lovely boys! Emotionally intelligent kiddos.
So much love and respect to Connor and his family. He is a very kind, strong, and very truthful young man.
while watching this video I was very struck by how emotionally intelligent and kind both Connor and his little brother are
The dad’s smile at the end 🥺 what a lovely family.
This is a great video! Connor reminded me of myself when I was his age when he talked about school being boring and that he'd rather watch TV, though of course his situation is much different than mine.
He and his family seem like very smart and kind people trying to make the best of an awful medical situation, and I wish them all the best.
I hope Connor lives as long, happy, and healthy a life as possible!
Oh yeah? Well I wish that for everyone. Beat that.
Oh Connor, when I was your age, I too used to wish so badly that I never had to go to school again!😂
You're an amazing young Lad and it was nice to learn about you.
Cheers, from Ontario Canada 🇨🇦
When he said i hope people think im nice, friendly, & kind 😢 omg what a sweetheart ❤
“Just take your time because you know you’ll be there” so wise and beautiful and we can all learn from that
I love his bro he is so sweet, smart, understanding, and helpful!! 💖 I'm so glad Connor has the support that he has. That is so hard having an invisible illness that's why it's always important not to assume what's going on on the inside not our place to assume or judge. I have a soft spot for ppl with invisible illnesses for sure, having severe depression myself ect.
So true to not assume what’s going on inside. And I hope and wish you all the best with your struggles with depression 🫶🏻 keep your head up and you are worth it ❤️ God bless and Jesus is always there for you
De corazón espero puedas superar la depresión 💖✨💪. Tus palabras me hacen quererte abrazar 🙌 . Cariños desde Argentina☀🌈🌹
Thanks all. I mentioned my depression btw because I have depression super bad 😢 like very hard to do day to day things because depression is that bad. I wouldn't just bring it up if it wasn't severe.
@@javi9038thank you ❤
It’s amazing what this channel does to me. A humbling, amazing experience every time. ❤️
I hope Connor's disease gets more recognize after this video and more people can get interested in trying to help and investigate for treatments and cures.
Right
I wish…
He’s so adorable. Wishing him a long and healthy life 🫶🏻
Tough wishes
@@AlexandreG Not necessarily. There were a few men with this disease who lived to be mid forties
@@emmafox6351 exactly, not long and not healthy, sad as it is kid is doomed in those terms, that still doesn't mean he can't have a happy and fulfilling life...
Two beautiful boys. So smart and incredibly well spoken.
Two of the best brothers I have seen.. Thank you for sharing your story, and what you go through. You are a very smart, and strong young man.
His brother is so smart and caring. I'm glad he has such a good brother.
How cute is Ryan? Both boys seem to be old souls with nice personalities, and they seem very smart for their age
Makes me so grateful and happy that the father is doing a great job reminding him to always remember his medication and to be aware of any symptoms or signs; And great that his brother can just be a brother and be kids together
"7 out of 10" LOL what a lovely brotherly bond they have.
damn i feel so bad for Connor and his family.. it sucks so much that there isn't a cure for this boy. i got really emotional about this video, specially when the dad spoke..
"Just take your time, cause you know you'll be there" 💕 he's so wise
The brothers are so sweet and seem so well mannered. When I was 8, I too used to deny all the time that I would sing in the bathroom. I'm wishing the best for the entire family ❤️
He is so sweet and I pray for a cure. And his little brother is mature beyond his years. Wonderful family ♥️
What intelligent boys. Bless them both. They have a beautiful bond.
Both of these boys are obviously articulate and intelligent. Great parents, too.
Lil bro has the MOST honest eyes... Connor, you're a rad lil dude- the way your family rallies around you, brother - that is worth more than anything else in this world. You keep on keeping on, take care of yourself and the way you said "you just take you time till you get there" - you have an amazing grasp on your life. Little bro; that is something even us lame 43 year old game designer dudes can't even manage... you're the GOAT kid, love to your whole family and know you guys have the SBSK extended family out here pulling for you!!! YOU ROCK!!!!
this kid is absolutely adorable, i love the connection he clearly has with his mom, and the love he has for his brother. what a lovely family. i pray he will live a long long time and be as happy as possible. ❤
I wish you well
The boys are very charismatic. I can imagine lots of kids wanting to be friends with them. I wish the the very best.
That is one eloquent eight year old! Best wishes to this beautiful family.
This kid is an angel ❤
The guy behind the camera as well.
Me, a 33 year old, while the mum was talking about biology class "MITOCHONDRIA IS THE POWERHOUSE OF THE CELL!"
Thank you so sharing your story, your family was an absolute pleasure to meet! 💕
Lol seriously, that's one of those random things from grade school that always sticks in your head. Another, for me, is that Eli Whitney invented the cotton gin.
Both of these boys are so intelligent for their age, bless
I truly hope there is medicine or a cure found for this disease. He is such a sweet young man. Wishing him and his family a cure soon!
@Hello there, how are you doing this blessed day?
They’re a lovely family. All the best for their future.
@Hello there, how are you doing this blessed day?
It was cool when the dad said that he also had a condition just like his son that is heartwarming to hear that it is so cool.
thank you to the family for spreading awareness…
His little brother is extremely well educated 😳
His brother is so humble and kind. And so mature for his age. I pray for a cure. 🙏🏼
Connor's little brother is so cute! Wishing Connor the best in managing his condition.
Keep an eye on lil bro. He's going places.
"Just take your time, you know you'll be there" I love this. He's such a beautiful humble kid. Crying my eyes out for him. We love you. You got this!!
A truly beautiful family.
Aw, Connor is such a sweet, gentle soul. His little brother is so smart and well spoken for his age. What an amazing family. Respect 🙏 to the parents and keep strong.
Connor is definitely a quirky boy. This is one lovely family. I am in awe of little Ryan. He is so young yet he understands things about his brother so well and he does genuinely love him.
Connor’s answer about wishing for no school is a typical answer. I didn’t like school very much. His answer about wanting more toys is typical for an 11 year old boy.
lets all just appreciate how intelligent these kids are. they are very socially/emotional intelligent and hugely well spoken
Those kids must hang out with their intelligent parents a lot. They speak very advanced for their ages
Such a handsome kid and there’s something just so cool about him. He may not be able to run around like other kids but he’s got an air about him that’s going to really take him places when he’s grown.
Aww, those two boys are as sweet as can be. I wish Connor so many good things in life and I hope he has a long life as well. Lots of positive vibes to this awesome family 🙏🙂
Chris your questions are incredible. Particularly for the two young boys.
This resonate so much to me and my family. Both my mom and my sister have heart conditions, both of my grandparents died of heart attack when they were young, I never got to met them. My grandmother had several open heart surgeries before she passed away before of complications. My cousin also had a pace maker inserted because she was dying of heart failure... I remember when we were kids and me and my cousin played basket and ran while she could just watched us. It made us so sad, most of the time we would just stop playing and sit around with her.
Her, my sister and my mom are still fighting and I have to get checked regularly. Invisible disease are so hard to handle because some people won't understand it, thank you so much for talking about this.
Sending love to this young man and his family.
Oh my gosh those brothers are the sweetest ever!!
I lost my older brother when I was 24 and he was 27, and these kids are reminding me of our relationship. I hope they have a long life together
I'm sorry about your brother, an unexpected death leaves its mark
"[I want people to think] That I'm nice, friendly, and kind" 😭
My heart is now a puddle. What a sweet kid. I hope he never loses that outlook.
Ryan's like "Connor man, I am NOT prepared to drop my single this quarter, could you PLEASE retract that singing comment until a more appropriate date? Thank you! Jeez, that was a lot, time to bounce this out on the trampoline."
I really enjoyed hearing their opinions on things. Such clever, kind and thoughtful kids. And great parents
That little boy has the most beautiful smile!
I love how kids are truly honest with they're answers. A bond between brothers is an unbreakable one. Thanks for sharing this story. Connor is a strong fella & I hope the best for him. Were all rooting for you Connor!
Love love love 💕 this channel. Connor is such a sweet young man and he has a wonderful little brother and a beautiful family. May this sweet young man live and prosper longer than expected. 💕❤️💕
I will pray for this lovely, dear, kind little boy. He’s lovely and I wish all the best for him and his family and all sentient beings everywhere. He’s such a sweetheart. Such a lovely chap!
@Hello there, how are you doing this blessed day?
@@GeorgeMorgan6600 Hello, my mental health isn’t so good at the moment, but I am doing my best and I’m hopeful…
@@GeorgeMorgan6600 How are you?
@@victoriasalter1701 sorry to hear that, wishing you a speedy recovery. Where you located?
I’ve heard about this because I saw a TV show about two kids, particularly the youngest son, and the mom of the two boys actually created the foundation. Sadly, the two boys who had this have died. The older boy died very young and there was no diagnosis for him at the time. They only found out he died from it because his younger brother had the same symptoms as him and got a diagnosis. When I saw the video and saw what syndrome he had, my heart truly broke. I hope Connor can live a happy life and enjoy it for as long as he can.
What a funny kid:) He is definitely an old soul!