BELGIUM: Michiel Vandeweert, Flemish Creator Who Lived With Progeria, Dies at 28
Michiel Vandeweert, a Flemish content creator who openly shared his life living with a rare genetic disorder, has died at age 28.
His family announced the news in a statement obtained by VRT NWS earlier this week.
Vandeweert was diagnosed with progeria at a young age. The rare, progressive genetic disorder causes children to age rapidly starting around age 2. According to the Mayo Clinic, life expectancy is often around 15 years and there is no known cure.
Doctors had once told Vandeweert he would likely only live to 12. He far surpassed that, becoming one of the world’s oldest living people with progeria.
On Instagram, YouTube, and Twitch, where he had a combined following of over 90,000, Vandeweert shared both daily life with progeria and gaming content.
At 15, he published his memoir Ik Ben Michiel — “I Am Michael” about facing a low life expectancy and navigating life with progeria.
He and his 20-year-old sister Amber, who also has progeria, were featured in the documentary How To Be Alive: Amber and Michiel, released earlier this year. The film followed the siblings for months, showing the realities of living with the condition.
Tributes have poured in across Belgium.
“People sometimes complain and nag a lot about small things. When you look at how Michiel lived his life, you can only have admiration for that,” said Rik Kriekels, mayor of Diepenbeek, where Michiel lived.
Belgian soccer club KRC Genk, which Michiel supported, also honored him in an Aug. 10 Instagram post:
“It is with deep sadness that KRC Genk bids farewell to Michiel Vandeweert. Michiel truly loved life and was a loyal Genkie. His courage and positivity were a source of inspiration to many. Our thoughts are with Amber, his parents, family, and friends. Rest in peace, Michiel.”