Michiel Vandeweert, a Belgian content creator known for chronicling his life with the rare aging disorder progeria, has died at age 28.
A Life Beyond Expectations
Vandeweert, of Diepenbeek, was diagnosed with progeria as a young child, a condition doctors said would likely claim his life by age 12. Progeria is an extremely rare genetic disorder that causes rapid aging beginning in early childhood, with an average life expectancy of around 15 years, according to the Mayo Clinic. By living to 28, Vandeweert became one of the oldest known people in the world with the condition.Across Instagram, YouTube, and Twitch, Vandeweert built a combined following of more than 90,000 people, blending gaming content with candid glimpses into life with progeria.
At age 15, he published a memoir titled "Ik Ben Michiel" ("I Am Michael"), detailing how he confronted a shortened life expectancy. His story reached a wider audience this year through the documentary "How To Be Alive: Amber and Michiel," which followed him and his 20-year-old sister, Amber—who also has progeria—as a film crew documented months of their daily lives.
Vandeweert was also a devoted supporter of Belgian soccer club KRC Genk, which honored him on social media Tuesday.
"With deep sadness, KRC Genk bids farewell to Michiel Vandeweert. Michiel was a true lover of life and a loyal Genkie. His courage and positivity were a source of inspiration for many. Our thoughts are with Amber, his parents, family, and friends. Rest in peace, Michiel," the team wrote.
Diepenbeek Mayor Rik Kriekels praised his outlook on life despite his illness. "People sometimes complain and gripe a great deal about small things. When you look at Michiel's outlook on life, you can only admire it. Despite his disability, he enjoyed life every day. He always said hello and was always cheerful. He was an example to many, certainly to me," Kriekels said.