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/
Another syndrome I have never heard of. Thank you for making us aware 🙏 I really wish research would do more for these rare conditions! But unfortunately, as always, it's a question of money. For my condition we did fundraising to finance an important study because the government wouldn't give any research funds. And now the company that produces the medication rather wants to do a different study where they can earn more. It's so inhumane. Also we as humanity should spend money on diseases and our planet instead of wasting it in space...
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!
"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.
@@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
“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!
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.
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
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.
@@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
More like lil 8yo bro's sense of humor is top notch: "I do not sing and it's certainly not annoying." And "when we grow up we'll be brothers and we'll really like each other. Certainly more than we do right now. *smirk*"
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.
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.
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.
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..
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.
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.
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.
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.
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
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 🇨🇦
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.
I'm so impressed. Both of these boys composed themselves and answered more articulately than most adults are capable of. They are obviously blessed with exceptional parents. God bless this family.
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.
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 🙏🙂
Mom and dad, you are incredible. No matter what Conner's future holds, I hope you know how blessed he was to have you for parents. Through all your family trials, you're raising two sweet, loving, intelligent boys. ❤️
@@emloufox 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...
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!
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. 💕❤️💕
Connor and Ryan have such amazing personalities! Barth syndrome is so rare !!!! I hope both the kids have an awesome life ahead ! The parents are really nice and supportive !
A lot of wisdom in that young mind! Connor, you have all of those wonderful attributes that make you a great friend that anybody would be lucky to have, and a wonderful person. Your strength, intelligence and personality shine so brightly, and will take you far! Sending lots of love and good wishes to you and your beautiful family from the UK 🇬🇧💗😊
I’ve read that boys with Barth syndrome can live to their late 40’s. But that’s right now, hopefully science can help this little guy out in the future. He’s a cutie and I’m truly impressed with his younger brother!!
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.
I have never heard someone so well spoken as these tow young men and wow Ryans vocabulary is extrodinary i struggled to even put a sentence together at his age.
God bless this young lad, he's very smart, well mannered and a little gentleman. When someone is living with a disability or a disease that isn't visible it can be difficult for other people to understand the trials that person goes through just to live as normal a life as possible, kids even more so as they just want to be kids. Thanks for making these videos and spreading awareness of such rare and lesser known medical challenges.
I have three brothers, we argued a lot, but we didn't really fight. We played a lot of board games and rode bikes a lot. We are older now and get along fine. Conner, you are a trooper, God bless you my friend, and your family. Ryan take care of him, he loves you. Prayers to you and family. God bless the child.
What a beautiful family. It's amazing how open they are with both children. I love how much his little brother understands his brothers condition. Both boys are so smart.
What cutie pies! So sweet seeing these brothers talking about eachother. Thanks as always for opening the door to let folks share their stories and make their disabilities more visible :')
Hi Conner, I just wanna say that I can definitely relate to you. I have a condition called Graves disease and that means that my immune system is attacking my thyroid gland. And when it does that my thyroid produces too many hormones and since too many hormones are being made that takes a lot of energy away from me. I am tired all the time and I also can't do well with heat. I am taking medicine for it but it doesn't completely help my energy levels. I am still slow moving and still get constantly overheated but I am not nearly as sick as I was before medication. People with Graves also have heart problems but mine is somehow ok. Also i look like a normal person, so people don't know that i am sick which makes things kinda hard sometimes. Anyhow I just wanted you to know that you aren't alone out there and everyday that you are on this planet for is precious. Keep on fighting.
This family is so wonderful! I wish nothing but the best for them. These little boys know nothing but the love they have for one another ❤️ It just shows you no matter how different, or how many challenges one has, children make the best of anything ❤️ Us as adults should follow the examples of children. Mom and Dad, you both are doing an amazing job raising such wonderful children!
Even after having this disease that kid has the most precious and kind heart among many of us....... Just like this i wish the same that even after having all these difficulties he will achieve all the happiness and peace in his life ....❤️😊
Haha he reminds me of myself when I was his age. I would totally have been his friend if we were classmates. Awesome kid, I wish the best to him and his family.
Connor and Ryan seem to be great kids. And the parents did a great job the way the kids talk about each other and their feelings. I wish you all the best 🍀 And I totally understand that Connor doesn't want to go to school. I mean if you have less energy (which I understand extremely well because I have Myalgic Encephalomyelitis, also called ME or ME/CFS) and a lower life span, then why waste your precious time with classes you don't need? Of course I don't mean don't go to school at all, but why not go less? Then he could use his time more for other activities he actually enjoys. But I guess the problem could be that then somebody has to care for him during that time and thus can't work?
i understand it too. i’ve got cfs+fibro and i wish it was something that people would understand better. hoping Connor at least enjoys the social aspects of school.
If one of my son's had what he has, I would want to homeschool. But I would still have him in some kind of activity or some kind of meet up so he could have friends.
@@TheKatarinaGiselle Yeah that's an approach I didn't think of because it's not allowed in Germany. But I hope doing less hours would be allowed here... (I don't have kids yet and the kids I worked with were younger so I don't know for sure.)
@@honsegameing I'm sorry you also deal with that. I hoped there would be a change in how doctors and society treat ME/CFS due to the pandemic. But unfortunately a lot repeats itself for Long Covid. No we're not just tired 🙄 Btw, we have a potential cure in Germany. It healed 4 individuals with Long Covid last year and one person with #MECFS this year! Have you heard of it? It's called "BC007". But it's not available yet. We're trying to get the government to help. The government should support the small company to do a large study. We fundraised to help the University of Erlangen at least do a small study with that medication for people with ME/CFS but now that the money for the small study is available the company backed out and only wants to do it for Long Covid! And so far the government doesn't want to support a large study (for either group) which is necessary to get an approval for this medication. The government spent so much for Covid related issues but almost nothing on post viral diseases. In fact, 2022 is the first year they approved 5 million for research which is nothing in comparison to other diseases with similar prevalence (like MS). Same with H.E.L.P. apheresis. There's one doctor who does that in Germany for patients who can pay themselves (insurance doesn't cover it). Why don't they approve it for everyone? Why don't they make huge studies? I don't get it. Instead they sent people to rehabilitation centres where they get worse because they don't know about Post-Exertional-Malaise. So nothing change since Covid. There's not only death or recovered. There's so many people like us with long-term issues. We are here but they don't see us 😢 Anyway, I wish you all the best 🍀
@@TheKatarinaGiselle Maybe the parents would want him to homeschool too, but can't. We don't know what the parents' lives look like. Maybe they both have to work a lot to be able to provide for his medicine and general healthcare. And probably he's doing well enough in school that he's still capable of handling it and his teachers too, and the parents are taking everything into consideration but the future might be open. The point is, we don't know and we can't just assume and judge.
I love the comment about how his mom made him. That's a huge compliment! He needs a poodle :) that can be something special for him whenever someone else is out doing their "thing".
What a beautiful down to earth family. The interview was so informative and the children so well spoken and eloquent. There’s clearly so much love and support within the family and extended into the community. It must be so hard being the older child and having so many physical limitations
I can't tell you how much I love your videos. You interview some of the most precious, special people on earth and I would include you in that group! I'm not sure how you came up with the idea to do videos like these but I'm glad you did. Please keep on doing what you do best. Both Connor and his brother touched my heart. I'm not sure if anybody else caught this but when Connor said it annoys him when his brother sings in the bathroom, his brother vehemently denied singing but added "and it is not annoying!." That was so funny.
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.
Oh, man, “he’s not lazy”. Exactly, my friend! I’m much (much) older and have fibromyalgia and I felt that thought. It’s also invisible-mostly-but I understand what low energy feels like. I appreciate your honesty!
When the father said life expectancy. I felt that. With my daughter, I cried for the first year after I found out her diagnosis because I didn’t know her life expectancy but then I had to think that people die everyday from things such as car accidents (like my brother who was perfectly fine). So we just gotta live everyday for the moment as if it is our last. Now she’s 6 and I don’t think about her life expectancy. I just live everyday as if she will be here for the next one and the next one. She also has the situation where people don’t think she’s disabled but she is. She has 17q12 deletion syndrome and while some people get physical looking differences. Most of her issues is that her organs were attacked by it. I joke and say she looks pretty on the outside but ugly on the inside lol
They are well spoken..and it's just so admirable to see these two young men complementing each other in spite of this deadly disease...cuz you know it's important to teach your other children like what their sibling is going through and it's always starts from the family...they both are surrounded by people who are so brave and strong and we clearly can see the same positivity radiating from them. it's indeed a pleasure to see such a wonderful video!
