THEY TOLD MICHIEL HE MIGHT ONLY LIVE TO 12. HE LIVED TO 28 — AND HE MADE EVERY EXTRA YEAR COUNT. Michiel Vandeweert was just two years old when he was diagnosed with progeria, an extraordinarily rare genetic condition that causes the body to age much faster than normal. Doctors warned his family that he might not reach his teenage years. But Michiel refused to let a prediction define his life.

At 15, he wrote a book about growing up while knowing that his time could be limited. In 2018, he gave a TEDx talk titled “Life’s short, make the most of it.” He later built a following of more than 90,000 people online, but much of what he shared had nothing to do with his illness. He played games, talked, laughed and simply lived his life.  He wanted people to see Michiel, not just his diagnosis.

His younger sister Amber, who also has progeria, shared that journey with him. Earlier this year, a documentary crew spent months with the siblings, hoping to show the world their lives beyond the condition. Michiel was also a lifelong supporter of Belgian football club KRC Genk. After his death, the club honored his wishes by allowing his funeral to be held inside its stadium on August 17. 

His family has asked people to remember him not for what he survived, but for who he was. His hometown mayor described Michiel as cheerful, kind and an inspiration to many.  He was given 12 years, but lived 28—and filled those extra 16 years with experiences, relationships, laughter and purpose. If you were told at two years old exactly how much time you had, what would YOU do with it?