Michiel Vandeweert was told he might not live beyond 12 but went on to inspire thousands by sharing his life with progeria.
Michiel Vandeweert was given a devastating prognosis as a child. Doctors told him he would likely not make it past the age of 12.
But he went on to more than double that prediction, becoming one of the oldest known people living with a rare condition called progeria that causes rapid aging.
His family confirmed his death in a statement shared with Flemish news outlet VRT NWS.
Michiel built a following by sharing his life
Vandeweert amassed a combined following of more than 90,000 people across Instagram, YouTube and Twitch.
He shared gaming content with his followers while also speaking openly about what it was like to live with progeria.
At just 15, he published a memoir titled Ik Ben Michiel, or I Am Michiel, in which he reflected on living with a shortened life expectancy and navigating the everyday realities of his condition.
Earlier this year, Michiel and his younger sister Amber, who also lives with progeria, were featured in the documentary How To Be Alive: Amber and Michiel.
The film followed the siblings as they went about their lives, offering viewers a closer look at their experiences with the rare disorder.
Tributes pour in following his death
News of Michiel’s death prompted an outpouring of tributes in Belgium.
Rik Kriekels, the mayor of Diepenbeek, where Michiel lived, praised the young influencer’s outlook on life.
He said that Michiel’s way of living had given others plenty to admire, particularly when compared with how easily people can become frustrated by everyday problems.
Soccer club KRC Genk, which Michiel supported, also paid tribute to their devoted fan.
In an emotional message, the club said Michiel had truly loved life and described his courage and positivity as an inspiration to many and that their thoughts were with his sister Amber, his parents, other family members and friends.
What is progeria?
Progeria, also known as Hutchinson-Gilford progeria syndrome, is an extremely rare and progressive genetic disorder.
Children with the condition appear healthy at birth but begin to develop signs of accelerated aging during early childhood.
According to the Mayo Clinic, the condition causes physical changes associated with aging and can lead to serious health complications, particularly involving the heart and blood vessels.
There is currently no known cure, and people with progeria have historically had a significantly shortened life expectancy.
Despite his diagnosis, Michiel refused to let the condition define everything about his life.
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