Influencer Michiel Vanderweert with rare genetic disease that causes rapid ageing dies aged 28
Michiel Vandeweert, a content creator who wasn’t expected to survive into adulthood due to a rare genetic condition, has died at the age of 28.
News of the Belgian’s death was confirmed to local media, with a statement shared with Dutch-language outlet VRT News on behalf of his family reading: “Michiel leaves a deep impression and an indelible memory with everyone who knew him or followed his story
“We wish the parents, sister, family, and friends much strength during these difficult times.”
Riders stuck upside down
The content creator had lived with progeria, a rare genetic condition which caused him to age rapidly.
Vandeweert was diagnosed with the condition at the age of two and built an online platform raising awareness about the disorder and sharing his day-to-day life.
He posted on Instagram, YouTube and Twitch – having a combined following of over 90,000 across the three platforms
(Instagram/@michielvandeweert)
At the age of 15, Vandeweert published a memoir titled Ik Ben Michiel (I Am Michiel), which detailed his experiences growing up and coming to terms with having a shortened life expectancy.
Progeria explained
According to The Progeria Research Foundation, Hutchinson-Gilford Progeria Syndrome (widely referred to as ‘progeria’) is caused by a genetic mutation to the LMNA gene, which is responsible for keeping cells healthy.
Without the protein produced by the gene, a person’s cells become unstable, leading to rapid ageing.
Progeria is extremely rare, with statistics suggesting that one in every four to eight million children are diagnosed with the disease. Roughly 400 people are known to be living with the condition.
Children born with progeria will develop symptoms within the first year of life; this includes:
Slower growth (most people with progeria reach an average height of
Hair loss
Wrinkled skin
Loss of body fat
A large head size compared to the rest of the body
People with progeria are also at an increased risk of developing heart conditions, with Mayo Clinic stating that most deaths occur from a heart attack or stroke.
There is no known cure for progeria, with the average life expectancy being around 15 years.
Michiel Vandeweert with his younger sister and parents (YouTube/TEDx Talks)
Despite doctors expecting him not to live past the age of 12, Vandeweert defied medical expectations by living 16 years longer, making him one of the oldest living people with the condition.
While progeria doesn’t run in families, both Michiel and his younger sister Amber both has the condition.
The siblings were previously featured in a documentary for the outlet released earlier this year, titled How To Be Alive: Amber and Michiel.
Amber also shares content about her life online, with her TikTok account having close to 200k followers.
Vandeweert also gave a TEDxTalk about his condition, titled ‘Life’s short, make the most of it’ in 2018, revealing the moment he learned what having progeria meant.
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“Despite me and my sister’s disease, I look on the bright side of life and try to live each day to its fullest,” he told the audience.
“So don’t complain about the things you’re not capable of, but show the world what you are capable of.”
Vandeweert also credited his friends and family for helping him enjoy life to the fullest, with his hobbies including snowboarding and go-karting as well as gaming.
Featured Image Credit: Instagram/Michiel Vanderweert
