‘You can only have admiration’: Michiel Vandeweert, who defied progeria odds, dies at 28

Doctors once told Michiel Vandeweert he might live only until the age of 12. He went on to reach 28, documenting his life, pursuing his passions and becoming one of the world’s oldest living people with progeria.

Vandeweert, a Flemish content creator who openly shared his experiences of living with the rare genetic disorder, has died at the age of 28. His family confirmed his death in a statement obtained by VRT NWS earlier this week.

Vandeweert was diagnosed with progeria at a young age. The rare and progressive genetic disorder causes children to age rapidly, with symptoms beginning around the age of 2.

The condition is associated with a significantly shortened life expectancy, which Mayo Clinic says is often around 15 years. There is currently no known cure.

Despite the prognosis he received as a child, Vandeweert lived far beyond the expectations doctors had once given him.

He built a substantial online following by speaking openly about his life with progeria while also sharing gaming content.

Through Instagram, YouTube and Twitch, he reached a combined audience of more than 90,000 followers. His story was also captured in his memoir, Ik Ben Michiel, which he published at 15.

The book explored his experience of confronting a drastically shortened life expectancy and finding his own way forward despite the challenges posed by the condition.

Vandeweert’s story was later brought to the screen in the documentary How To Be Alive: Amber and Michiel, released earlier this year. The film followed Michiel and his 20-year-old sister Amber, who also has progeria, as they navigated everyday life with the rare condition.

His death has prompted an outpouring of grief and admiration across Belgium.

Rik Kriekels, mayor of Diepenbeek, where Vandeweert lived, reflected on the perspective his life offered others.

'People sometimes complain and nag a lot about small things. When you look at how Michiel lived his life, you can only admire that,' he said, according to VRT NWS.

Vandeweert was also a passionate supporter of Belgian football club KRC Genk.

The club paid tribute to him on Instagram on August 10, remembering him as a devoted supporter whose courage and positivity touched many people.

'It is with deep sadness that KRC Genk bids farewell to Michiel Vandeweert,' the club said. 'Michiel truly loved life and was a loyal Genkie. His courage and positivity were a source of inspiration to many.'

The club also extended its condolences to Amber, Vandeweert’s parents, family and friends.

For someone whose childhood prognosis was measured in years, Vandeweert ultimately built a life that reached far beyond those expectations. Through his writing, videos, gaming streams and documentary appearance, he left behind a public record of a life lived with remarkable determination.