An influencer who suffered from a rare ‘Benjamin Button’ disease has tragically died aged 28, defying doctors’ predictions that he would not live beyond 12.
Michiel Vandeweert had amassed nearly 1m followers across his social media accounts, where he shared his extraordinary zest for life and positivity.
He suffered from progeria, a rare genetic condition that causes children to age rapidly and develop features of accelerated ageing.
Doctors predicted he would not live beyond the age of 12, yet the Belgian defied those predictions.
According to Belgian media, Michiel died of heart failure on Monday (10 August).
He had been due to undergo a second major heart operation.
Originally from Diepenbeek, Michiel worked as a DJ and gamer, among other things, and won a Jamie Award, a Flemish online video award, for his gaming content.
Through his determination and positivity, Michiel lived to be one of the oldest people in the world with the condition.
Together with his 20-year-old sister Amber, who also has progeria, he inspired many people by living life to the fullest.
In his TEDx talk, ‘Life’s Short, Make the Most of It’, he stressed the importance of not constantly focusing on what might not be possible, but instead looking at what is possible.
The same message features in his book ‘Ik ben Michiel’ ‘I Am Michiel’), which he wrote when he was 15.
Michiel and Amber were recently the subjects of the documentary series “How to Be Alive” by production company Boundbreakers.
The company said in a brief statement: “Michiel leaves a deep impression and an indelible memory with everyone who knew him or followed his story.
“We wish his parents, sister, family and friends strength during these difficult times.”
Michiel was also a huge supporter of KRC Genk, as reported by Need To Know.
The football club said on social media: “With deep sadness, KRC Genk says goodbye to Michiel Vandeweert.
“Michiel was a true lover of life and a loyal Genkie.
“His courage and positivity were a source of inspiration to many. Our thoughts are with Amber, his parents, family and friends.”
Superstar goalkeeper Thibaut Courtois, who began his senior career at the club, also paid tribute, writing: “Rest in peace, Genkie.”
Amber is now the only person with progeria in Belgium.
She wrote: “Rest in peace, brother. I miss you so much.”
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