Michiel was diagnosed with progeria in early childhood. It is an extremely rare and progressive genetic disease that causes children to age unnaturally fast as soon as they turn two years old. According to the Mayo Clinic, people affected by this disease live on average only up to 15 years, and there is no cure for it. According to the Belgian news service VRT NWS, doctors once said that Michiel would hardly live to see his thirteenth birthday. However, he far exceeded these expectations and became one of the oldest people in the world living with progeria.
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M. Vandeweert boldly shared his experience and daily life with the world. He gathered a community of more than 90,000 followers on Instagram, YouTube, and Twitch platforms. There, the young man not only spoke openly about living with his diagnosis but also shared regular video game content.
As he grew up, he better understood his situation and at just 15 years old published a memoir titled “I am Michiel.” In it, the young man described facing a short life expectancy and how he finds the strength to move forward. Moreover, a documentary film “How to Be Alive: Amber and Michiel” was recently released.
It captures the daily life of the brother and his 20-year-old sister Amber, who also has progeria. The filmmakers followed the young people for several months, revealing the true reality of living with this syndrome without any embellishments.
The news of the creator’s death shocked all of Belgium and sparked a huge wave of sympathy. The mayor of Diepenbeek, the city where Michiel lived, Rik Kriekels, did not spare kind words for the deceased: “People often complain and grumble about all sorts of little things. But seeing how Michiel lived his life, one can only admire.”
Final respects were also paid by the top league football club KRC Genk, of which M. Vandeweert was a passionate fan. On Instagram, the team shared a heartfelt message:
“With deep sadness, we say goodbye to Michiel. He truly loved life and was a loyal fan of ours. His courage and positivity inspired many. Our thoughts are with Amber, his parents, family, and friends. Rest in peace, Michiel.”
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