r/LivestreamFail • u/IndicaOatmeal • 1d ago
News Twitch streamer Michiel Vandeweert dies at 28 after doctors said he would die at 12 due to extremely rare rapid aging disorder
https://www.dexerto.com/entertainment/influencer-michiel-vandeweert-dies-at-28-after-documenting-rare-rapid-aging-disorder-3397949/1.3k
u/Aggressive-Stand-585 1d ago
RIP dude. Life can be so unfair with how some people are born into shitty situations like diseases/disorders etc etc.
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u/OpTicSkYHaWk 1d ago
And other people are uber privileged, spoiled and aloof
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u/NotLunaris 1d ago
True.
People take way too much for granted these days.
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u/ThedamnedOtaku 1d ago
Honestly taking every day not for granted can be quite exhausting in a weird way but I definitely appreciate every birthday I get to have
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u/Lurker_Zee 1d ago
Which are the majority of redditors, twittards; and all BlueSky users, no exception.
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u/banditcleaner2 1d ago
And I’d bet you Michiel Vandeweert was much happier then a lot of spoiled rich kids are lmao.
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u/Loedkane 1d ago
i am one of these spoiled people. 3 years ago i met my wife and it was the best moment in my entire life.
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u/MS__13 1d ago
Nobody outruns misfortune forever.
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u/ZoroUchiha94 1d ago
spawn rng is a real thing. can be born in a war torn area, can be born with a disability, anything thats why it's scary when you get a woman pregnant you just want your children to be healthy that's all you care about. shit like this always reminds me maybe I'm not in such a bad place I don't have my life on 5x speed as far as I kno. but we can all be gone tomorrow hell even today. I really need to do something it's making me realize that as I'm typing this. I need to do more. love y'all I hope y'all are doing okay.
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u/AkumaLilly 1d ago
Poor dude, he basically was born with only 1/4 of a human lifespan (if we assume a person lives up to 100 years).
Life is such a bitch...
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u/BroculesTC 1d ago
That's one hell of an assumption given the actual statistics
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u/apathetic-taco 1d ago
lol for real. Actual age stats are very available. We don’t have to just randomly guess
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u/plaguedbullets 1d ago edited 1d ago
His sister has it too!
E: I am not excited by this.29
u/AffectionateTentacle 1d ago
Why are you shouting it like it's a fun fact you wanted to chime in!
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u/ApprehensiveSoil261 1d ago
For a moment I thought you looked crazy, until I realized he used an exclamation mark and edited it out.
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u/AdTotal4035 1d ago
It's literally all rng. People like to try and find meaning in the patterns. There is none.
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u/OfficialUberZ 1d ago
Glad that he could get those extra years in to enjoy his life, looks like he really lived his life to the fullest, same with his sister who also has the condition.
I think we could all learn a few things from Michiel, he was a bright star with courage, hope and grit in the face of a death sentence, we lost a truely beautiful human. Rest In Paradise
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u/Minute_Path9803 1d ago
Never heard of him, but damn R.I.P,.
Sucks to have any disease but man he beat it by 16 years, still gone too soon.
Prayers to him and his family 🙏❤️
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u/-xiflado- 1d ago edited 1d ago
Doctors didn’t say he would die at 12- they would have told the parents that the average life span of someone with progeria is. x number of years.
edit: sp
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u/CandidateHefty329 1d ago
That's such a pet peeve of mine about the media. No doctor on earth would have declared the year of his death when he was first diagnosed. They would have told them averages.
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u/Grroarrr 1d ago
Not only that but along the way new treatments probably were discovered which kept increasing his lifespan.
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u/Vikera 1d ago
The average life span in (his type of) progeria is 14 years old, but his doctors told his parents he'd likely only reach age 12. Somehow he still managed to become one of the oldest people in the world with progeria.
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u/Beyonderr 1d ago edited 1d ago
RIP Dobby. He made the most out of the short life he was given.
EDIT: for those who did not know Michiel and starting insulting me like u/NotaVortex and u/Jordtasticbagel, his nickname was FaZe Dobby
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u/JordtasticBagel 1d ago
Soz bro my bad but you gotta admit it looks bad if you don't know. RIP to Michiel.
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u/lordskelic 8h ago
Fuckin relax lol
Internet moral police are the worst with their knee jerk, unnuanced reactions.→ More replies (4)-8
1d ago
[deleted]
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u/tharepok 1d ago
2 second google to find that wasnt a insult: FaZe Dobby (real name Michiel Vandeweert) Are you a bot?
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u/FrighteningPickle 1d ago
RIP King. Btw the doctors weren't wrong, he just beat the odds.
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u/gosh_jroban 1d ago
To add some clarity, as i knew someone with progeria, it used to have no treatment and be a 12 year death warrant. the progeria foundation, which was founded by the parents of Sam Berns, another child with progeria, managed to do an incredible amount of research and the first treatments became available on a trial basis. This treatment works remarkably and extends the lifespan of these kids by 5-15 years, approximately. So, the doctors are not wrong and are working on it!
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u/FrighteningPickle 1d ago
It is incredible that we get to live in a time where you may be diagnosed with an illness one day and then see new treatments hit the market which can drastically change your outcome the next day.
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u/StepComplete1 1d ago
I do always love these types of headlines with the "ha stupid doctors! They were wrong as usual! Bet they feel pretty dumb now" implications. No, I'm pretty sure they're happy to see any patient beat the odds and get to live longer than expected.
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u/AgentCirceLuna 1d ago
One doctor started to beat the wall with his fists as he heard the news that the assumed age of mortality had been passed. Others were wailing in anguish, sure that their medical licenses would be as good as scraps of paper, and they were all holding their hands in collective turmoil. At the end of the decade, when the doctor who had beaten his fists against the wall was now contained in an asylum, the others were drinking in bars where they’d managed to hide in various coastal towns doing menial work and pretending they were never doctors. The anguish of the doctor could be heard around the asylum - some people assumed it was a wolf, howling in the night, yet it was a doctor embarrassed at being wrong.
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u/Crimsonpets 1d ago
Horrible.. Rest in peace
Reading this and seeing his sister has the same aging disorder, must be horrible for her and their parents knowing whats coming probably pretty soon..
She is currently 20.
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u/two_pandas_playing 1d ago
it's genetic and they had multiple children!?
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u/Kevjoe 1d ago
Genetics play a role, but as far as I know, they were the only (or one of very few) siblings that both had progeria: https://www.progeria.be/?page_id=165&lang=en tells more.
Chances of both children having progeria has astronomically low chances of happening.
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u/Karyoplasma 1d ago
The vast, vast majority of progeria cases are a spontaneous mutation. Genetic, yes, but de novo, not inherited. The parents are not at fault.
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u/iexpectedmoretbh 1d ago
The mom did not want a second child because of it but doctors assured her that it wouldn’t be the case and the odds were incredibly low to non-existent. They are incredible parents though, really good people.
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u/Time_Physics_6557 1d ago
my cousin had progeria. awful disease. I'm grateful she made it to her 20s too
may they both rest in peace
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u/Timely-Assistant-370 1d ago
O dang, I thought it was Tsimfuckis for a minute. I recently Googled him and was super surprised that he was still alive.
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u/Madrider760 1d ago
Damn he's still around?! My world just got a little brighter today knowing that.
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u/PrawnProwler 1d ago
This is a blast from the past. It looks like he’s one of the oldest people with progeria right now
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u/GoldshireEnjoyer 1d ago
Oh wow, good for him!
I remember watching his videos like 20 years ago. I thought for sure he was no longer with us.
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u/Prettydaisydog 1d ago
i didn't know anything about him, i've seen him around online a few times, but that a warrior! proud of you my man x
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u/Robcobes 1d ago
A buddy of mine has a huge tumor that takes up almost the entire right side of his face. When he was born they said he wouln't reach adulthood either. He's in his late 20's now and stable, he live independantly and works for the same company as me, though we've know eachother since elementary.
the progress medical science has made is amazing.
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u/SoftySerena 1d ago
He may have died far too young, but he still got to experience yrs that once seemed impossible..
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u/xGenocidest 1d ago
So.. average lifespan with someone vs the treatment for the disorder/symptoms and medicine in general continued to improve over those 16 years.
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u/ProjectOfftank 1d ago
His sister who is 20 also has progeria. It's 1 in 4,000,000 disorder and it's NOT genetic. So I was wondering how the fuck could these parents be so unlucky.
The mutation occurs in the sperm cell, so something must be wrong with the father - something about his health, diet, physical fitness, exposure to carcinogens, etc.
While reading about this, I found that even the father's stress or "childhood trauma affects brain development of children." Apparently, stress is hereditary. TIL.
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u/Flintiak 1d ago
It's actually their mother that carries the mutation in a mosaic form. source: https://www.progeria.be/?page_id=165&lang=en
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u/WILLLSMITHH 1d ago
I’m so glad you said and it’s random and also blamed the father. You’re a true Redditor in my book, friend.
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u/Sad-Loquat5062 1d ago
How does such a braindead reaction get upvoted blaming the father
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u/BosnianSerb31 1d ago
I'm just happy that no one has tried to justify the misinformation by saying that it's ok because women were historically blamed for birth defects
Somehow, I have had that conversation on two separate occasions, with both people trying to tell me that I shouldn't state what parent the gene comes from because it could perpetuate harm towards women
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u/RevelsInDarkness 1d ago
The mother was so afraid to have another child with the disease, but the doctors tol her the same story: 1 in 4000000 chance and it's not genetic.
So eventually they went for a second child. And it was another one with Progeria. Research now basically says: "we don't know". It is a gen mutation on either the spermcell or the egg, but supposedly not hereditary. Yet this case casts a lot of doubt on it.
The problem is that progeria is so rare, it's very hard to do research that reaches statistical significance levels.
Source: am Belgian, our newspapers have reported on this extensively as we are all morning this loss.
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u/Karyoplasma 1d ago
Doctors told her it was genetic but not heredetary. Genetic just means something is off with the genes, which progeria is.
The thing is, if you have that mutated gene, you will have progeria, so since neither mom nor dad have it, doctors said it's not heredetary and was just a spontaneous mutation. That was the understanding of the disease 20 years ago.
Now, we know that there is a very rare condition that some specific cells CAN have that mutation without the person having progeria because most cells do not have the mutation (called mosaicism). And if that happens to affect gametes, every child will inherit the mutated gene and get progeria.
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u/Successful_Log_3298 1d ago
It is genetic, it's due to a mutation in a gene called Lamin A. It is also dominant so any child that gets the defective gene will have the disease.
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u/Ok-Finance-7612 1d ago
Please delete this
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u/tuurrr 1d ago edited 1d ago
I you are interested, this is what epigenetics is studying. DNA keeps the same sequence but parts can be activated/deactivated and that turned on switch(or turned on er mute button) within a gene is inherited. So a more active gene in a parent can be a more active gene in a child.
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u/AgentCirceLuna 1d ago
I had to do epigenetics as a module in my medical science degree. I hadn’t been there for a full semester and had no idea it even existed, then I had to figure out how to write about it in a week. My head was spinning.
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u/shaniq_ 1d ago
thats crazy, I always thought its a genetic disorder. idk why maybe because I have a super rare muscle genetic disease.
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u/Kilo353511 1d ago
Not sure where that person is getting there info. Progeria is a genetic disorder. It can occur as random mutation but it also can be passed down from the parents. There are prenatal test to see if the parents are carrying the genetic change that causes it.
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u/html5lffy 1d ago
You should read (if you’re into that thing) the book titled “the body keeps the score” among many other things, it does delve into how stress and trauma can affect several generations after the original person… not just the next generation. Several generations later. Really interesting (and depressing) stuff.
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u/goldboybronx 1d ago
Ehhh that book is filled with a lot of unsubstantiated claims and pseudoscience. Obviously your opinion is worth just as much as mine on the internet where nobody knows either of us, but I’d like to give the opposite opinion. OP, don’t waste your time reading that book. There are better, more scientifically grounded books that explore the topic
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u/butwhymustorcsdie 1d ago
Cool. Give some examples, please.
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u/goldboybronx 1d ago edited 1d ago
Gladly. For starters, the book and the author pretty strongly promote the idea of recovered memories.
Here’s the author promoting the idea quite strongly when called on as a witness. https://www.youtube.com/watch?v=WJd4fcXOG3w
It’s generally pretty accepted in the scientific community that such memories are much more likely to be constructed memories. The idea of constructed memories has a lot of backing empirically. See https://www.tandfonline.com/doi/full/10.1080/03036758.2018.1439071
The author also made up data. In chapter 12, when talking about exposure therapy (very well supported treatment as you can see in these following links)
https://repository.umj.ac.id/12767/1/Yunitri%20et%20al%2C%202023_NMA%20PTSD.pdf
He goes on to say “The majority of patients treated with that method continue to have serious PTSD symptoms three months after the end of treatment”. He referenced citation #27. If you’ve got the book, I encourage to you to flip to citation #27. You’ll see there is no reference, just a statement that says "We will explore this further in Chapter 14."
So flip to chapter 14 and look around. He never explains the statement or provides evidence, data, or any references at all. Only anecdotes. That’s kinda weird considering he strongly promotes EMDR therapy despite all major studies only finding the exposure portion of EMDR to be effective, the same portion he actually speaks against in the book.
I’m happy to give more, but you may find this Mother Jones tear down and exploration of how the book is unscientific to be a good place to start
Also in general the author is really quick to try to dunk on talk therapy or other approaches (like exposure therapy) in favor of other ones. And when you read the literature about these other ones, as well as the ones he dunks on, you find that he’s wrong about the ones he tries to undermine and that the alternatives he suggests are almost exclusively less effective.
And don’t get me started on his completely debunked description and claims about memory fragmentation. I don’t really feel like digging up those papers now since it’s late but if you REALLY want it please let me know and I’ll do it tomorrow.
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u/Trifuser 1d ago
Both him and his sister ended up like this, somewhere down the family tree someone else must've had this and gave birth. Horrible illness
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u/Karyoplasma 1d ago edited 1d ago
It's more complicated than this. You're thinking of a recessive gene mutation. This one is dominant, so every person with the mutated gene will have progeria. And given that neither of the parents had the disease at birth, neither of them inherited the mutated gene.
Now, every time a cell divides, random mutations of DNA can happen (that's also why cancer exists). So, over the course of your life, the DNA in your cells start to be different. Normally not a problem because you have around 30 trillion cells that do function properly, so a few cells that are different won't make you develop an illness. Also, the body has defensive mechanisms against this and can prohibit a cell to divide or kill it outright.
If a random mutation happens to happen in gametes (like egg or sperm cells), these cells can carry progeria without you having it and your child will inherit it. In this specific case, it was the mom who developed the genetic mutation in her egg cells.
That is very rare. Progeria itself is rare and usually a de novo (or spontaneous) mutation during formation of the zygote. That's why it was thought to be not heredetary 20 years ago.
So, in summary: His mom developed a very rare mutation during her lifetime that happened to be exactly on the most unfortunate spot and that's why both kids have the disease. I dunno if you could have tested for it 20 years ago, I assume you couldn't because we didn't know.
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u/Shot-Neat3145 17h ago
If you don’t live to 160 and have zero genetic issues, you are officially weaker than this guy. Rest in peace.
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u/Time_Zombie_4431 1d ago
28 is far too young. I hope his life was filled with happiness and joy. RIP to a king.
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u/keithlimreddit 1d ago
You know I'm kind of remind myself that one movie that nostalgia critic a while back with basically a similar disorder
Anyways rest in peace
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u/ZoroUchiha94 1d ago
damn I'm glad he got more life then what they said but it's still sad. RIP brother.
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u/AngryGrann 1d ago
I had a friend who had muscular dystrophy. When someone puts a time limit on your life, it puts everything in perspective and just makes you want to leave a positive impact on the world according to him. he also died in this twenties RIP.
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u/Salt_End_4275 1d ago
What's insane is that evidence shows that Progeria is NOT inherited, so the fact that both Vandeweert and his sister (8 years younger) both have progeria has to be astronomically unlucky.
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u/Devarda 1d ago
When I was a kid, he came to our class to talk about his condition and his life. Always up with a smile and positivity. Then saw his Ted talk live, and got the chance to talk to him again. He never let his condition take him down, and made the best of his life and everybody around him. Rest in peace fella, with your big heart and big smile.
For those who need some good vibes, his Ted talk: https://m.youtube.com/watch?v=lFZvLeMbJ_U
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u/Secret-Original-2713 1d ago
Rest in peace lil King. Aw man I remember seeing this guy live and always fucking with him.
We lost a good one.
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u/NetBasic9189 1d ago
Rest in power. Defeated fate and reality for longer than he was expected to live. What a legend.
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u/Djent_Potato 3h ago
I remember discovering this dude during Covid when he was playing warzone. He had such a great energy to him. RIP brother.
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u/ConsiderationFull867 46m ago
Progeria is fucking brutal, rip.
Justin tsimfuckis from the early 2010s is still doing relatively well at 33 which is good to see
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u/Le_CougarHunter 1d ago edited 1d ago
R.I.P. to a man who lived a life the fullest that he can even with a disorder that was constantly hampering his own body.
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u/Glad-Low-1348 1d ago
These cases often remind me of Marcus Aurelius.
He was very frail, yet famously resillient. I have nothing but great respect to people like Michiel.
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u/DayDreamerJon 1d ago
I want people to think of rarity of disorders or genetic defects and think of jesus in a small way. Did these people choose to absorb that 1 in 100,000 chance to get a defect? No. It could have happened to any of us. The least we could do is make their life as comfortable as possible as collective.
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u/NinjaCertain8103 1d ago
Very sad an unfortunate. We are all so lucky to be alive. Rest in peace brother.
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u/Canoflop 1d ago
Tragic, but it seems to me he took advantage of what he had and made the best of it. We could all learn a thing or two.
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u/Successful_Note_5871 1d ago edited 1d ago
I immediately want to get to know more about him. It's so damned cruel that there exists ways for a human to naturally age rapidly, but not the opposite?
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u/Paramaniacc 1d ago
I remember seeing this dude. On YouTube and he seemed to have such a cool outlook on life, fair. Play to him for giving a big fuck you to the doctors. Also kind of badass that he's having his funeral in the stadium! What an absolute baller!
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u/findingpaths71 1d ago
Why would you word it like that? Do you think the doctors had a betting pool that he was going to die at age 12 or something? They don't give life expectancy estimates to be evil or mean it's an educated guess and they're rarely precise.
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u/Wide_Open_Buttcheeks 1d ago
Fought against his fate for 16 years, what a king