This Young Man Is One Of Two People In The World Coping With A Rare, Nameless Disease | NBC News
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- เผยแพร่เมื่อ 6 พ.ค. 2019
- UPDATE Oct 2, 2019: Mitchell Herndon passed away on October 2, 2019. He was was taken off life support according to his final wishes after doctors discovered the disease had infiltrated his brain. He was surrounded by his family, and left in peace according to his mother Michele Herndon.
Mitchell Herndon has a disease so rare that there is no name for it. As one of only two known patients in the world, he grapples with a reality that sees him as a case study for doctors who are only beginning to learn about his condition.
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This Young Man Is One Of Two People In The World Coping With A Rare, Nameless Disease | NBC News
![[TH] 2024 PMSL SEA W2D1 | Summer | ถ้าไม่พร้อมลุย ได้ไปคุยกับรากมะม่วง](http://i.ytimg.com/vi/XlkKtVvBxac/mqdefault.jpg)
It’s no longer a nameless disease. In 2020 they named the syndrome “Mitchell Disease”. He donated his body to science to help them understand his disease more. RIP Mitchell. My heart and prayers go out to the loved ones you left behind.
He always said he wanted to donate his body to science so that they could try to find out what was going on.
There already exists another condition called Mitchell's Disease, though, so they may or may not change it in the future to avoid confusion.
What a brave and amazing young man 🥺🥺
Screw u u ruined my day I was gonna name it
@@LavaAnime ''Erythromelalgia, formerly known as Mitchell's disease (after Silas Weir Mitchell), is a rare vascular peripheral pain disorder in which blood vessels, usually in the lower extremities or hands, are episodically blocked (frequently on and off daily), then become hyperemic and inflamed.''
They need to try to reach out to the girl in Korea. She's probably feeling lonely too.
I was also wondering that. But would HIPPA laws make this impossible?
@@bingbongcentralhq Nope, Korea releases all medical info to the public.
Pink really?
@@cutienerdgirl that's gotta be awkward sometimes
@@magnumxlpi glad I don't live there. I went to the hospital for hemorrhoids once 😶
It’s really sad hearing him talk about how one day he wanted to be a father and knowing at the same time the he passed away 6 months later R.I.P.
God dammit yeah I'm bawling my eyes out right now thinking about he wanted to meet a girl and him talking about his plans for the future. ffs the world is a cruel place.
He may be reincarnated and have an amazing family in his next life… I’m not Buddhist or anything but who are we to say we understand God or a higher being/consciousness? RIP
@@GaminGilmore At least he died,world is even more cruel to those who fell in love with the girl that doesn't love him back and now he just has to live rest of his life knowing this.
Rikrish Shrestha That seems quite personal I'm guessing you're talking from experience? Do you want to talk about it? It's only the comments of TH-cam but I'm sure whatever you're going through someone can help? It's better to talk than hold everything in!
@@NvS-oj9xi you're right . This case is from my experience But no worries, those painful days came and now i'm somewhat fine. But, as i said, you still Have live through knowing that the person u loved will never be with u, and its always stuck like a nail in ur heart.
This is a moment of realisation when most of us dealing with useless crap everyday find ourselves burnt and stressed out, and this young man on the edge of progressive dying stayed positive and still had aspirations. It's a paradox how most of the people who suffer from diseases have much more optimism and energy to live than anyone else who's healthy and consistent in life. Rest in peace, warrior :(
They really are some of the strongest people imaginable😢
That's cause they were born that way for example someone who was born with the ability to walk wouldn't care about it but when someone is born later on can't walk they'll wish to walk and they'll be often nicer then others
Maybe because they are born with it? You think some people are born losing their job, born with the various other issues they face?
Clearly he's doing fine and coping fine with his issues, because he's gone his entire life like this.
@@silverdemon1530 He wasn’t born that way. It didn’t start until he was 12 years old.
@@chumbue6537 He wasn’t born that way. He was 12 years old when it started.
Rest in peace Mitchell. He lost his fight on October 2, 2019.
what- 😭🙏
@@user-oo6vr1ky5f it states that in the description of the video 😢
So sorry that he has passed on.
Oh no...
So sad 😥😥😥😰😭😢
I hope he and the other girl can meet. Being the only two people with this has to feel lonely.
It most definitely is lonely
@@mitchellherndon5343 I admire your honesty. Most people try to downplay their struggles for the camera and masquerade as happy-go-lucky when the reality is that they are not. It is wonderful that you have a supportive family and I genuinely wish nothing but the best for you. I know you don't have all the answers you seek but I hope through treatment and the love of family and friends you at least find some peace and comfort in your life. Sending lots of love and encouragement from NY. ❤️
@@mitchellherndon5343 I am sorry that your two are going through this.
Stay strong dude. Your story is one of a kind, and although that means it’s lonely, it also means you get to see a side of things no one else can see. Best of luck in the future!
@@mitchellherndon5343 Just subscribed! Sending positivity and hope your way! 💖💕
Fortunately through the research conducted by the team at Baylor, and the generosity of Mitchell and his parents’ DNA, Mitchell Disease caused by abnormalities in ACOX1 protein via amino acid substitution of N237S was observed treatable with the drug bezafibrate. Bezafibrate was proven to suppress these deficiencies in fruit flies that lacked ACOX1 (mimicking Mitchell Disease) and had a significant improvement in lifespan, vision, motor coordination, and neuronal function (Rodriguez, 2020).
oh thank god
Thank science
Yes thank science. It’s amazing that the first of only 3 global cases for a new disease put his body on the line for scientists to discover the primary causes and develop a therapeutical treatment.
@@mallorykane2843 Thank God for sane science.
@@mallorykane2843 u must be fun at parties
Rest In Peace, Mitchell. He seemed like such a kind soul. He’s at peace now, prayers to his family. Seeing a story like Mitchell’s makes me inspired to be grateful for life.
Spoilers smh😕
@@james.mcdonaldtv where? I don’t see it? Did he really die? Someone just said they’re giving him fruit fly medicine which extended his lifespan.
@@ceezb5629 the description says he passed
No way ):
Guess he never found that special someone
It's scary being diagnosed with a disease even if it's curable. It's even scarier to be diagnosed with something that doesn't even have a name and therefore no general plan of treatment.
Must be terrifying.
If I found that out about myself at 12 I wouldn’t know what to do other than break down in tears
@chris madsen Yeah, that's what I said.
And it's even scarier not to be diagnosed at all.
Ps4 is better than Xbox 1
It’s sad, because the South Korean girl is now the only person in the world again... :(
Who is the other one?
@@clomyst the guy in the video you just watched was the other one, but he’s no longer here.
@@AiyaaaJenny When did he die? 😭
@@jimhcanencia8245 October 2nd, 2019
@@AiyaaaJenny no i mean what's the name of the girl?
The fact that he can still smile is just unimaginable.....I wouldn't even be able to maintain my sanity
That’s pretty pathetic for you then
@@NoName-fo7mz bruh
@@NoName-fo7mz bruv
My grandfather is suffering from creutzfeldt-jakob disease he is progressively getting worse everyday but he still smiles and kinda chuckles at jokes even though he can't really talk anymore. It's very sad.
He died tho according to other comments
To be able to live life to the fullest and be happy even with such a rare and life-changing condition is quite special. I hope that someday answers will be found. May he Rest In Peace.
You only see what you see on tv he’s obviously really strong and showing this best attitude to set an example for others who will suffer like him one day, but I’m sure he suffered deeply inside and had many outbursts
It’s not really that special. People learn to appreciate life more when they have less than others or when they know their time is more limited. They try to make the most out of their situation.
@@Erik-uo1cx He VERBALIZED that. He said he didn't want people to think he didn't have hard times and that yes it sucked etc but he still tried to make people feel comfortable around him. How lonely it looked when he was in the w/c at that event sitting in the STAIRWELL b/c there was no place for him with others... : (
@@TheWelchProductions 💯💯
Mr. Beast come support your lookalike twin
Update: this comment is a year old. Rest in peace my g
Anne Tan Ya! I thought it was Mr Beast when I saw the thumbnail...
Anne Tan EXACTLY WHAT I WAS THINKING
😂😂😂😂
Omg I just posted the same comment (almost)
1:18
Doctor: You have a very rare disease
Patient: How rare?
Doctor: You pick the name
Dayum
Yay?
Love your username, lmfao, also he might not be the first of the two people, and that's only those who we know are alive
Watch the last hoodbender
spooky vaginosis
So unbelievably sad. Makes my problems seem petty. My sorrows go out to his family and friends.
Seriously the things I stress over seem so minuscule compared to his situation, kind of angers me that I take my life for granted when there are people with far far more serious problems.
Nice
Ikr I would rather live happy and disabled then normal healthy body with sadness
@@nanyabiznus4738 as if you can't be happy and have a healthy body?
@@uselessdegenerate7565 there is always people like you isn't it. Twisting people words.
So sad to have an extremely rare disease that turns out to be fatal. R.I.P Mitchell, you will no longer have to suffer. 🙏🏾
Why did this have to happen to him?? 😭😭 how did he die. Oh May he Rest In Peace
@@trapper_3890 Not in vain. It's now been named Mitchell's Disease. Treatment maybe coming in the future.
@@trapper_3890 read the description it explains it
Sad for the life to be so relatively short, but being born is always fatal eventually.
He looks like a mix between TheOddOnesOut and Mr. Beast
Natalie Hill YES EXACTLY
I was looking for this exact comment
exactly
I felt like is Mr beast trolling or something
I was about to say that but was scared that people would attack me 😂
I cannot unseen this
Never really notice how lucky I am to be able to walk, run, jump, grip, all without effort or rehab. He’s a true inspiration. Wow.
we’re fr blessed
As someone who has multiple autoimmune and joint conditions, you really are. ♥️ Do something that we can't today.
@@KathyAnne28 yes. may i ask for something specific? not to be ignorant but i wld hate to think to myself “what wld someone who is is handicap-able, do?”. hope this greets u positively. thanks.
@@KathyAnne28 just saw your videos on your channel, you're so pretty. I hope you're doing okay & happy, GBU ❤
We gotta count our blessings
My daughter has a very rare genetic mutation as well same story but her symptoms started at birth. There was only 2 know cases which ended in death when she was diagnosed. She has a very rare form of genetic epilepsy called SCN8A. They had no idea how to treat it still don't now we have around 190 kids around the world. Her case was really severe doctors said that they didn't think she would last past 6 years old. She had 8th birthday 2 week ago!
God bless y'all. I hope you are able to find help for your little girl.
Oh that’s amazing!! Congrats!! 💕
@@griffenriley6998 amen
How about 10?
Does your daughter do a high fat diet for her problem? Have you tried it? Look into the Charlie Foundation and also the carnivore diet...
For people being like "I'm not gonna complain about anything ever again"
No don't do that. Yes what he went through sucked and he was able to be happy about things but don't put your problems aside cause others have it worse cause really everybody is going through stuff. Your problems are valid and you are valid for what you feel so speak out when something is wrong. Complain when you want to cause its not good to bottle stuff up.
Don't compare your problems to others cause we all deal with stuff.
umm your weird dude!😕😞😒
you’re right and you should say it !!
@@hollywoodbelongstosatan6557 Your weird dude
@@hollywoodbelongstosatan6557 *you’re
@Rodent omg we love a philosopher! fr tho you're so right :)
The way he talked about loving a girl, getting married and having kids made me tear knowing he couldn’t live and get any of those bcs he passed away...
No, don't be sad. Just think of it more like this:
God simply hear his wishes, take all of his pain/suffering, and grants those wishes by taking him to the beautiful Heaven way before us. Just believe that now, He can finally be happy, forever.
😢
If reincarnation does, surprisingly, exist, then I hope his next life is a great one...
@@ren0552 it's so sad, meanwhile there are young men out here just existing with no plans whatsoever
I cried because he encapsulates countless qualities that I look for in a partner. He deserved the experience of romantic love.
Kudos to this guy for not being super negative and even smiling and making jokes.
Ryde Mk Eh, not all people with a sickness/disability go around being sour over it all the time
datbig304 dude, that’s not what he said. He just said he respected the guy for being able to look at the light side of things. Don’t be such a downer
@@mavibaso Never denied that, just thought it was weird that he should be extremely praised for not being "super negative" and even smile (oh my, can you believe it??) and make jokes (Yabai!!!!!) as if being disabled is the most horrible thing in the world that should really make you miserable
Meanwhile you got perfectly normal people that are blessed and go all suicidal. No appreciation for what they have and its pretty sad.
@@tareqal-hasan4975 I see what you mean, but to some people life is the opposite of a blessing. Honestly can't blame anybody for feeling whatever they feel.
From his voice and demenour, he sounded so nice and sincere. I feel sad the world lost a good human being.
This dude is an absolute LEGEND. All the horrible medical run arounds he had to be part of, sacrificing the already short time he was given just to give hope for someone in the future that may have the same issues.
Much love brother 🙏
Yeah RIP
He wasn’t getting the run around. His case was so rare that the scientific and medical community had never heard of it. Doctors and scientists were doing the best they could with the information available. So they had to invent treatments and therapies - this trial and error is basic to science.
"This Young Man is One Of Two People In The World Who Are Mr. Beast"
Csanad Tamas right tho
YES
Bruh😂
Bruh chain
Bruh.com/bruh.bruhtml
My daughter, Laura age 32, died in April 2019. She had many diseases and disorders that developed through the years, many were autoimmune related, but some were rare or undiagnosed. She eventually got the flu and her body was so weakened and damaged that she couldn’t recover. She often said to me, “mom, I won’t live past 40” and she was right. Her greatest wish was that we donate her body to a research lab so that if she had to live with so many painful and limiting diseases, at least someone might benefit in the future. So we donated the organs that we could and then sent her body to the lab as she wished. Laura made the most of her life and lived more in her 32 years than most. And her example and legacy lives on. We should all do so well. Much love! 💕🐝 #Bee Kind
God bless her soul 🙏🏻 . She was an angel 😊
She sounds like she was a beautiful, wise soul. May she rest in peace, and may her memory be a blessing 💕🙏
Cathi Shaner i am so sorry for your loss. I know Laura is at a better place
Rip🙏
I'm sure Laura is happy in heaven. RIP and sorry for your loss
How sad he didnt get to live out his ambitions... I hope you are doing everything you wanted in the great beyond
His soul has reincarnated! And he's a bean spout! PRAISE THE LORD!
@@carinadominguez22 I think he is a bird now.
@@carinadominguez22 no such thing has reincarnation. This life, is the only one.
@@river. Nope. Bean spourt.
@@chillvibed Tell that to the guy in the video. He's a plant now! So he probably won't remember. Or be able to talk to you.
Dear Mitchell’s family,
I am a sufferer of “ Erythromelalgia “ another rate disease which is the other Mitchell’s disease. I send you strength and love. Your son will live on and his legacy will be that he wanted to help others who might also develop his disease. I think they should honor him by calling the disease by his full name, Mitchell Herdon Disease “.
Thank you for sharing his story- especially in his own words. He is a brave, articulate young man. May he now be free to run and live on without pain or any limitations.
Abby
I would never want a horrible disease to be named after me 😬 Also, why Mitchell and not the 14 year old girl in South Korea?
@@AdelineCowgirl he likely helped with the study of the disease more since his parents were involved in the process too. A previous comment also pointed out that they could find a potential cure thanks to his and his parents' dna
probably because 1: he was the first person to get it or at leas pass away with it and 2: he contributed a lot to the study for it@@AdelineCowgirl
It required both patients and two medical teams two medical teams to bring about this discovery. Of course it should include both if that is what the Korean family desires
@@ArohaStillThank you for sharing this information.
His mom smiled in every part of the interview... It’s like when you already cried too much and ran out of tears...
Dang
It's her mask.
Naw I just don’t think she was sad at the time
@@virgocx7178 You can literally hear her hold back tears at 6:51 wym
just because you expect someone to be emotional doesn't mean they have to be. grow up, the fact that you think tears equals sincerity is so immature, cringe and ignorant.
My man knows that his time is extremely limited and he's still happy to serve as a case study, that's a strong mindset.
Strongside He wishes to help advance the study of the human race so that future generations who potentially get this disease will have a cure for them and not have to suffer as he did. He’s an icon of what the human race lives for. To strive and advance
*Respect +100000000000* For Him.
I'm never going to complain about anything else in life. Thank you Mitchell and rest in peace.
Hey dude, even when some people are going through awful stuff doesn't make your own problems invalid.
Everyone is dealing with stuff, some worse than others but you should still take care of yourself.
@Kazumaf Wheres the hyperinflation thats bs
@@Student0Toucher there’s definitely some inflation happening.
This weekend im going to volunteer and a childrens hospital. Bring a portable monitor and gaming console and play games with kids that are sick. We all have more to give. We all have the time. We need to do better as people. We need to love eachother more.
Well said bro. Good on you
No you're not 😂
polarization
@@hornedgoatweed
How did it go?
Now you are a hero
He should meet that 14 year old girl from South Korea. He will at least feel better.
Explain?
How can that make him feel better. Feeling glad someone else suffering the same condition he is?
The Innocent it’s called ‘bonding”...when two people share something so rare it will undoubtedly help them feel less “isolated” in their disease.
It’s exactly why nearly every chronic disease...like cancer, diabetes, etc...all have therapeutic support groups available for sufferers...sharing info and feelings always helps one heal...souls get healed as much as the body when we share.
@@GuadalupeGuacamole I see. Thanks for enlightening me.
Only the two can truly understand what the other is going through
Knowing he actually lived for 5 months after this was filmed makes this really hard to watch. Especially when he was talking about dating and his future :(
My heart goes out to his family
He will forever be an inspiration for others to look forward to the positives in life. His story and perspective might have saved others.
@@SquirrelModeller People like me. It did. I do hate sometimes just how much empathy I have. To not even know someone but to get so sad for their pain.
Wait he died??
@@kayd.926 Written on the description box !
@@kayd.926 unfortunately he did
Going to live for this young man and never take a day for granted. Rest easy Mitchell. Maybe one day I'll see you again, in some other form 🕊
But the afterlife isn't real tho ecks Dee 7777777 🤣🤣😂😂🤣🤣😂🤣😂🤣😂🤣👌👌👌🔥🔥🔥💯
Living is hard. But i respect this man. I shall continue to live
Hopefully I become a bird
@@Melody-jk8eu 💀💀💀
@@swikabl5965 Hey, little buddy, your idiocy is showing! Now, I know it's hard to keep it put away, and this is forever going to be an issue for you, but try to keep it down, okay, little buddy?
Just finding out about Mitchell today. I understand this condition is now called Mitchell Disease or Mitchell Syndrome so other kids won't have to deal with having something unnamed or unknown. I truly hope that someday when researchers find a way to stop this, they will name the protocol "Mitchell Treatment" or something similar so he can be honored in the healing process as well.
That coconut oil spray from trader joes is a struggle for anyone to open
Spencer Jolley 🤣 this comment is true
Omg for real
Thank you
I don't get it 😅
Spencer Jolley WTHHH while I was trying to open the coconut oil Spray from Trader Joe’s , I saw this comment 😭😭😭😭😂😂😂😂😂
"I don't know if I'll be wearing this out in public"
-Puts it on Television
yeah the difference between thoose is too hard to understand for you and 101 like minded fools.
Yeah because making people aware of his mutation is the same as him being worried of being judged socially
Get over yourself lol
@@j.w.213 Is spelling "those" right hard as well?
On TV your mood is already set up to not laugh
Too soon, chill bro 🤣
When he started sharing his hope of finding love .... dang. He seemed like a wonderful young man with no hatred.
I appreciate how he expressed how hard things were, and that it sucked. There is so much toxic positivity in the chronic illness community, it was refreshing to hear him be honest.
MITCH IS MY FRIEND YOOOOO HE’S A RADICAL AND STRONG DUDE I’M SO PROUD OF HIM
Tell him I said that I have high hopes for him
Tell him to make a youtube channel to keep people updated and maybe spread some awareness
yoooooo mags
Mitchell Herndon yoooo mitch how u livinnn
he really is strong, sticking through this
How unfornate and sad hearing he already died, he even donated his body to professionals to examine his disease. Such a good and selfless person, may god bless you.
He died wtf.......
@@BruudaOsas read the description.
@@spaceranger8856 can’t wait for your turn
@@marster_1203 that’s weird but okay
@@marster_1203 yeh me too
i wanna see his loved ones just get over his death
this guy was so strong, emotionally and mentally if not physically. his determination to keep on going even though he was going through such a tough time is absolutely astounding. i can't even imagine what it's like waking every morning and knowing that you will probably never get help, and that you just have to keep going. rest in peace mitchell herndon, you will be missed.
My heart hurts for the Mom and Dad. As a father, I can not imagine how difficult it must have been to not be able to get an answer of what’s wrong. The last thing a parent wants is to be helpless to protect their child 😢
Imagine being the other person who has it and you find out you weren't chosen for the video lmao
hi bye why an American news network would go to Korea for a girl when there’s a American kid right here in the states. It’s probs to drum up American awareness.
Like Lil Wang said, now imagine in Korea there's another video about the disease but Mitchell wasn't chosen.
Chad Rose he was making a joke he didn’t mean for it to be taken so literally lmao
@@swill3677 ah, don't worry. I realised the joke. Just wanted to comment something xD
Chad Rose but if both of them met it might be nice to watch the conversation between them
I really like this kid said thank you to everyone who helped him
I certainly try my best
@@mitchellherndon5343 you are a kind and sweet human being. I hope the future holds a solution for your condition. Keep fighting!
@brett linthicum whatta narcissistic 👏
@@mitchellherndon5343 You are an AMAZING person. I am blown away by the wisdom, maturity and compassion you possess. I know this will sound cliche and I hope I'm not being insensitive.....but you are a very special person. I firmly believe you have a special destiny in front of you. I think you will change the world and improve the lives of millions people around the world. You are meant to do something great. Even this documentary, the way you explain things and the way you smile....you are already changing the world. Please do not give up. You are the shining light for many of us who are suffering with medical mysteries. I look up to you and admire you so much. One last thing I would like to add is this (it will sound like a lot of new age nonsense, but I'm going to say it anyway).....the mind is a powerful tool. We are spiritual beings having a human physical experience. We are not our body, we are far more powerful and vast than we realize. I'm not saying that we use our minds to fly and stuff like that. But there have been people who have been cured of the most atrocious diseases....spontaneously! And doctors were equally baffled. Dr Joe Dispenza has healed himself through the power of the mind, for example. If these people did it, then there must be hope for others too. Anyway, that's all. I hope I didn't bore you or insult you in any way. You are in my thoughts, in my prayers and in my heart. I wish you all the very best. Take care
@@mitchellherndon5343 I'm from Brazil and I wish you all the best and hope you reach your dreams.
You have a beautiful family that loves you and this is something very special in this world.
Try to look to the good people you have in your life and be sure someday things will get better.
🍀🤞🥇🌟🏆
I just know there's an experimental doctor somewhere going "I'm THIS close to cracking it, I'm right there". We'll work it out for future patients. I believe.
Like they do cancer?
Keep dreaming mate..
@@karenthomson9749 Optimism helps.
@@karenthomson9749 ok Karen
You'll be happy to hear that a way of treating it has been found.
It makes me feel ashamed that i often times take my life for granted and forget that there are people out there that cant even enjoy life because of what they’re experiencing. Its a great reminder that when you’re going through something hard someone’s going through something harder. I hope the study of his body can one day lead to a better understanding of this disease
Like I said in my comment don't be ashamed of what your going through. Everybody goes through stuff and your feelings are valid. I've been told to not feel bad about my depression and think I shouldn't feel that way cause others have it worse.
@@ShadowSorcerer yep exactly.
MR. BEAST needs to give this guy some money cuz he sorta looks and sounds like him
Wheezing Ed that’s what I was thinking
I sincerely doubt his family is completely paying for his treatment. They're more likely to pay him since cracking his case would mean you were the first to come up with a cure and therefore you can name the disease or the treatment and doing so would mean instant noteriety and success. His existence is scientifically important.
yuki kanegawa I would imagine there would be fundraisers for him and his family
I kinda look like bill gates
@@FatherVisa Yeah I sorta look like jesus
There's just something so genuine about him. He tries his best to get on with life but doesn't hide that he goes through suffering too.
GrahamPhelan I try my best
Mitchell I hope GOD heals you. Ask HIM and he will do it. GOD bless you.
@@mitchellherndon5343 you are so handsome 😍 thank you for being inspirational and allowing everyday people to have a glimpse into what life is like for you. We are rooting for you!
I hope he finds someone as amazing as he is. He has a beautiful soul and he deserves to be happy.
Tracie Ross no
He was such a handsome little dude. My sympathy for his parents. I know they are feeling a great loss. He seemed like a good kid.
I’m glade you have a positive attitude. He is so strong.
He passed away 2 year ago
When you start valuying your every day life god has provided you, you become positive
I wonder how many people have had it that didn't have access to medical care and so were never diagnosed.
Or even misdiagnosed.
I can relate so much with this. Finding the right doctor who conducts the right test at the right time are all so important. It's a very difficult thing for people who deal with less common health problems, even in this modern age.
@@valeriavagapova Even in first-world countries, many times it is an uphill battle to get access to the right doctors who will listen to you, who have affiliations with elite research hospitals and teams of experts who will coordinate between each-other. It's very frustrating and EXPENSIVE when you have to hop around different specialists before someone gives you the right answer.
Ya they can’t be sure it’s just those two but probably still really really rare
Yeah, what if this happened to people in like, medieval times, or something? They would literally never know.
Guy: so what kind of disease i have?
Doctor: its so rare
Guy: how rare is it?
Doctor: you name it
I thought that diseases are named after the first person who had it... so... Herdon Disease?
Dedy Efendi memes man its funny 😣
That makes sense. Since Lou Gehrig’s disease (aka ALS) was named after the famous baseball player who suffered from the disease. Sooner or later this disease will be named after him.
Doctors are not Gods :S they are humans too..dedicate their life to medicine,they also get sick/die....unfortunately always will be something new that is completely unkown for them...
Pirate Candy
Or the Drs that discover it too right? My niece has Devics and the condition is really rare. Named after the dr that discovered it
I know the angels gave him a powerful set of wings, fitting for somebody so mentally, physically, and emotionally strong
It's so sad to hear that he's passed. He seemed to have a really good attitude about everything and a good sense of humor. He also seemed so optimistic about his future.
Doctor: You have got a rare disease
Patient: How rare?
Doctor: You name it
Patient: ........
And that's how lou gherig's disease was named
Or "we named it after you"
call it ligma lmao
@@adulthumanfemale420 why is the actually a great idea lol?
"wtfosis"
This dude seems hella funny, he's the kind of buddy I'd love to hang out with.
Yeah me too
Ok
Btw he has a twitter. twitter.com/mitch462?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor
What a beast! Amazing family truly had his back through it all!
R.I.P. Mitch!!!
RIP man 😔🥂this guy has motivated me so much with his positivity no matter the circumstances
He’s honestly very well spoken and mature, truly a strong person
An?
He is an hero.
@@TheSP33DFREAK no, just no.
ᴍᴀɢɪᴄ sʜᴏᴘ ღ a strong not an
He needs to try medical cannabis
I was so hopeful when he said he wanted to meet that special girl, get married and have kids. Then I read the description and my heart broke into pieces when I saw that he had died. My condolences to his family and friends that knew him.
Ikr
Yes, me too! I was so hopeful for him and wanted to even reach out to him and his family to show support! My heart just broke to pieces when I read the description. My prayers go out to his family, friends and the young girl in Asia who is also battling the same disease.
What if the korean girl is 12
@@kaito-fukasejam8387 he meant to meet the girl (to talk to her) and get married with someone else
@@kaito-fukasejam8387 the girl was 14, they said so in the video, not that that’s better, but I think he just wanted to meet her.
I feel the courage with him, cause like him, I also diagnosed with a rare disease. I knew 1200 people around the globe and knew only 3 persons in my country.
My heart breaks for his family. May he rest in a place where his soul is free. ❤️
I'll tell you this, he certainly had the right mother. What a genuinely loving person to say: "Why anyone?" She expressed her sorrow so well, but never came across as self- pitying. I pray she finds strength & comfort in knowing she did her absolute best for her son.
Ikr. Also 771 likes and no comments? I’ll be the first.
Guineapig1227 frrr
And the Dad! Amazing.
She will have her answer one day, when she’s reunited with him. Sometimes that’s the only thing we have to hang onto, and it is enough.
@@frisco61 There is no answer, there is no reason why this happened. It was totally random. She won't be reunited with him. People cease to exist when they die.
TH-cam,
Thank you for this recommendation.
I hope the best for him
Not that anyone cares but I was 1.1k like lol
Agreed.
1:25 this is when I realise I've watched this when it has just posted. It's now October 2021, I read the description, my heart quenches once more. Rest in peace.
How incredibly sad for anyone to have to go through this, and for his family to have to watch him lose his grip on life. They can be so proud of him and his attitude, and the legacy he leaves for other sufferers.
He was my classmate and we graduated high school same year. He past away Wednesday morning 10/2/19 after losing his battle with the illness after being taken off life support - his request. He didn’t want to be unable to interact with those he loved. Give prayers to his family and friends please. He was a good guy. Rest easy Mitchell ❤️
eh pretty sure you just got that out of the description
@@catalina4474 but if he didn't you are probably the most inconsiderate and rude person in this comment section
@@catalina4474 and if he did get it out of the comment section, that's actually discusting. Using someone for likes is really shallow
He didn't lose his fight! He simply passed away after a long, brave journey
Hey jordan, may god give u strengh. I watched this video often in my free times. He's such a beloved person, talk-active and so friendly. I always bursting into crying everytime i watched the video, especially when he said he wanna find a girl that loves him as he is, build a family and raise a childern, that's make my heart can't accept his passed. Afterall i hope you and his family doing the best. -passanger
I am sorry to learn his no longer with us. He seemed to be such a lovely young man notwithstanding his terrible disease.
H-he died?
@@vepm sadly. As far as i can find, he passed in October of 2019
@@Laika4895 yeah, im just read the comment, also the video's description. You know i've been crying for 1 hours cuz he passed away, like this video published on May 2019 and he passed away on October 2019.i can't deal with this
Omg no
I’m literally crying omg:(.
What a sweet young man. Has a lot of courage to face this battle. Rest in Peace brother
Such a kind, understanding and thoughtful man.
I hope he is resting in peace.
Life can be cruel.
Doctors: We have good and bad news
This guy: First good
Doctors: We are naming a disease after you
I feel bad for laughing at this
sleep you should
@@chickenhunter4694 you should feel bad about laughing at this and regret it cause there is a line you crossed
@@jhinabloomingflower807 What line? It's not even that bad of a joke.
@@chickenhunter4694 you shouldnt
He said he wanted to find love and one day be a parent.. and then i read the description.. 😭😭😭
To the family, I know it must be hard even after a year, honestly through a camera his smile was seriously contagious if not brightening, his laughter made me wanna laugh. I hope all of you are taking your time to grieve but admire his strength and positivity through it all. And i hope life after this comes much easier than having you bare any more heart ache. Best wishes and loads of love ❤️❤️❤️
Bruh if I hadn’t come across ur comment I wud have never known....
I know right. He deserved better. He is sleeping in heaven :)
Same here. Extremely sad :(
It's a reminder to appreciate everyday that we wake up relatively healthy and able.
If he didn't had that disease he would have been the best parent. Some diseases are so dangerous and rare that doing research is not easy.
I literally broke down crying at that moment. Poor boy never got to experience any of it. 😭
at least he doesn’t have to suffer anymore and he’s in a better place 🥺💕
What a lovely human being. I hope he’s flying free wherever he is. Maybe he’ll be reborn with a healthy and full life that he didn’t get to live this time around. He’s touched a lot of people’s hearts in the 19 years he was here 💕
I like how we all thought he looks like Mr. Beast
Haha I did
Lol yea for a second
He doesss
Yup
Mix between MrBeast and Odds1Out
Remember, respect an "I don't know" from a doctor. When doctors don't know, they just don't know.
SuperSausage3 Who are you to tell a stressed mother who’s going through something like that
You wouldnt understand how frustrating it is unless it happens to you. We're used to being able to go to the doctors for help. Some people even go last minute because that's how much trust they have that the doctor will help them. No getting that help is so terrifying
@@Helica123 it is, but you can't deny it. Remember, doctors themselves will say this. They are only 60% to 65% right.
@@blay6170 An honest person. Remember, a doctor who lies to make people feel good is far worse than a doctor who is honest.
@@blay6170 what do you hope? a placebo?
I LOVE this young man’s honesty. A legacy well written, Mitchell. Rest well…
Man, I cried, he seemed like a gentle, strong and caring person, he had so much energy, so much ambition and positivity. May he rest in peace forever❤️
I almost cried cause he reminded me alot of me until I saw the description and it reminded me of how limited our time is :(
@@alexosow Oh... hope everything gets better for you, stay strong!
I often watch mitchell video on my free times but yeah always ended up bursting into crying. I always remember what mitchell said in the end of video make me so freaking hurt, so odd , feels like he just born yesterday. I can't deal with this
I cried
Lovely lovely young man! Whole his family are loving people! So unfair!such a beautiful attitude he had for life , even his face was gentle and happy...💐💐💐💐💐💕💕💕💕
When he was talking about wanting to find that special girl, I was thinking, "You definitely will!" Many young women would be attracted to his kindness, honesty, compassion, humor, great family, and of course his good looks. I was so sad to read that he'd passed away shortly after this was filmed. What a very special young man. Rest in Peace Mitchell.
He was so handsome, too! I had high hopes for him and then I read the description after watching. His family is amazing
Sadly the majority of women see the illness not the heart
What a beautiful person. So positive even through all of this.
he is such a well adjusted young man. Rest In Peace
This is my friend’s cousin. It saddens me to say that he has passed away 💔 RIP Mitchell, I know you meant so much to Phil ❤️
I'm really sorry for you.
Hi.... I'm from India.... Pursuing BSc.... Me and my friend going through project about this condition (ACOX1 mutation) by seeing this video we r working on dry lab ..... So if I get little help from his family it would be easy for us........
He seemed like such a lovely young man. I'm so sorry to hear that he didn't make it.
He was such a beautiful person inside and out, sending prayers to his family and friends, I just know he would be with where he belongs now ❤️
Why did he pass away? I'm so sorry for your loss!
Rest in Peace, Mitchell. It was so good to be able to know you.
He died???
@@lovely.ameeeee485 Yeah, he passed in October of 2019.
💔
Rest in peace ! He seemed as so very likeable person.
Did you know him in real life? How was he? He seems so genuinely person, Rest in Peace for him ❤
he seemed so kind, lovely and smart. im so sad he passed before they could figure out a treatment. rest in peace. 💔
mannn he and his family members are such sweethearts. rest in peace mitchell. we love the positivity you gave to this world :)
Imagine if he became friends with the other girl who had the disease. They would have the rarest friendship in the world.
(Edit: Wow thx for the likes, never got so many. It’s crazy 🥰🤩 Rest In Peace Mitchell, we will miss you ❤️)
first of all, you are not funny... secondly he passed away more that a year ago :(
@@naturegirl51 He wasn't trying to be funny. Many people with rare diseases get to know the few others and are able to form stronger bonds.
@@naturegirl51 first of all he's not trying to be funny... secondly you being a jerk
@Prestonio Lin ... ok lets try this again - did you try a touch of humour with your second sentence?
I wonder if the girl is still alive and well (as can be). If he died at around 19 and she was 14 at the time of this, she might not have long left if he represents the average lifespan of this disease. Nature can be very cruel.
I appreciate his homesty in saying that he deals with a lot of crap, and that it's hard. It seems like so many people with disabilities and chronic illnesses try to sugarcoat and be "inspirational" about how their lives really are. RIP Mitchell
@Teal ... Yes, same. Like I had a conversation shortly ago about my life situation, life isn't easy for everyone. And, not all of us have the same choices, problems, nor opportunities. My life was very good at one time, but it changed a few years ago -- through no fault of my own. Now, I'm a care-giver for my mother, who is disabled now. And, people just don't realize how hard things are -- at home. And, no one wants to help. So, yeah, I am honest with people about the situation -- if they ask; but saying it to someone, is differnet than living it. Trust me.
@@PoeLemic Bless you for caring for her. I am sure God will bless you for doing that.
Disabled people don't want to be inspirational. We want to be people. Others force us into situations then act like we're so brave for breathing...
Disabled people don't try to frame their conditions as anything other than conditions they just live around. But even if they did try to "sugarcoat" them or make themselves martyrs, why do you care? If you don't know what life is like for them, why are you so hostile about how they tell their stories? Living with a disability can be extremely difficult at times, whether you're dealing with social or economic factors, and there is no problem with someone acknowledging their experiences.
@@fruitygarlic3601 this this this this this. The reason we smile is so that we don't cry infront of you!
What a fighter. Rest In Peace can’t believe he’s gone already :/
I wish you could have accomplished so much more. You obviously had a lot to offer this world. Prayers to his family. RIP ♥️
welled up when he talked about finding a girlfriend who loves him for who he is...beautiful
Dylan Jr yeah mr beast does have a lot of money
Then he said that he wanted children. That's an incredible lack of foresight given the fact that they have identified his condition as a genetic disorder. While it is not certain that it can be inherited, it is not certain that it cannot either.
@@brendon1689 Just becuase he dreamed about getting children, doesn't mean he actually is getting kids. Stfu now
@@brendon1689 Yeah that's why he said he WANTS kids, not going to have kids.
@@bobbybaeX
No need to be rude.
he seems very positive and kind. I really wish him and his family the best. Also to the young girl in South Korea ✨
Why couldn’t it happen to someone evil, like a criminal who murdered a whole orphanage or something?
@@gearrode Genetics and inheritance. The world is a random place after all
Static Outlaw true, but with some things you could say luck or coincidence comes into play.
ciel phantomhive if she was in North Korea they would have instantly killed her and they wouldn't have any information on this disease at all
@@gearrode the world doesnt care if you are good or evil only humans care
O Mitchell , so young ,what a mutual privilege of your parents and you having each other .Blessings to your family.Now you don’t have any pain ….Blessings to your family 🕊🌻🕊🌻🕊
Mitchell seemed like such a brave, sincere, vibrant soul and his family is beautiful inside and out. I'm glad his suffering and his tragic passing weren't in vain.
He didn't lost his fight just because he died. He, instead, inspire most of us to stay positive no matter how severe our condition is. Big salute to this guy💙💙💙
stay positive? like... suffering everyday?
@@Predestinated1 dude? Wtf? What I meant was even tho he literally suffered everyday, he was still so willing to live. He stayed POSITIVE about life that he can still smile and socialize with his loved one. I sincerely got triggered about your comment, pardon me. But yeah, that's what I only meant.
That's also why he greatly served as an inspiration for the ppl who doesn't feel worth to live anymore. There's a lot of ppl like him who literally suffers everyday but are still thankful on his everyday life.
@@emilzamudio1972 on the inside he suffered every day. Not all people want to live with eternal pain
@@Predestinated1 ok dude. It's my fault. Sorry for that.
man this is horrendous, from going to a normal 12 year old kid enjoying life to not being able to do even the basic of things and then ultimately dying extremely young. he seemed like an amazing guy too
It's always weird when life takes a hard right turn.
Reading that updated description after just finishing the entire video broke my heart. May you Rest In Peace Mitchell.
Oh, my goodness.... Rest in peace Mitchell. Gosh, that's soul crushing, what you and your friends and family had to go through... I hope your body will be of help for anyone else dealing with this strange disease.
The crazier thing is that there are most likely other people like him in impoverished countries who don’t have the money or resources he does which is why you don’t see a documentary on them
Yes, the disease might not be that rare. Others just don't have the means to connect with a doctors network or get any information on what is happening to them
Not just likely, there definitely are people, who very few will know, who go through their entire life with very rare diseases, that we won’t ever know their stories.
@Martin Shepherd centuries of blood, sweat and tears from whom though?
@Martin Shepherd I'm not saying he doesn't deserve it, in fact the poor kid isnt with us anymore. To address your opening question; one is not able to "create" resources when a corrupt government is at the top taking everything for themselves. Funnily enough, the very attitude is caused by colonialism where everyone had to be ruthlessly selfish while their country was being robbed at the expense of other countries' progress. RIP Mitchell
Apparently, one in every hundred thousand are affected. If my math is correct, then about 70,000-80,000 people have it worldwide. It is now called Erythromelalgia.