Progeria disorder explained as influencer, who doctors said would only live until 12, dies aged 28

Influencer Michiel Vandeweert has died aged 28 after battling a rare genetic disorder since the age of two, with his family confirming the heartbreaking news in a statement.

The flemish content creator has long documented his life with progeria, a rare, progressive genetic disorder that causes children to age rapidly.

In his home town of Diepenbeek, Belgium, Mayor Rik Kriekels said in a statement: "Sometimes people complain and moan a lot about small things. When you look at the way Michiel approached life, you can only have admiration for him.

“Despite his condition, he enjoyed life every day. He always said hello and was always cheerful. He was an example to many, certainly to me."

But he wasn't the only person in his family battling the life-long genetic disorder.

His younger sister, Amber, 20, was also diagnosed with progeria when she was an infant, and the siblings spoke about the condition during their documentary series How to Be Alive, produced by Boundbreakers.

Michiel and his sister Amber were diagnosed with the same condition. (@michielvandeweert/Instagram)

In the wake of Michiel's death, the production company wrote: "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."

What is progeria disorder?

According to Mayo Clinic, the disease often causes a child to have a life expectancy of about 15 years, and there is no known cure.

Doctors had previously told Michiel that his life expectancy was likely to be just 12 years. Despite this, he went on to live far beyond those expectations, becoming one of the oldest people in the world living with progeria.

Experts from the medical outlet explain: "Children with progeria generally appear healthy at birth. During the first year, symptoms such as slowed growth, loss of fat tissue and hair loss begin to appear."

Individuals are usually diagnosed with the disorder in early childhood. (Getty Stock Images)

And while there is currently no cure for the condition, 'new treatments and research show some promise for managing symptoms and complications'.

Symptoms of progeria

Mayo Clinic outlines that symptoms can include:

• Slowed growth and poor weight gain, with below-average height and weight.
• Lack of fat that's stored just beneath the skin.
• Head that is large compared with the face.
• Small jaw, chin and mouth and thin lips.
• Thin, curved nose with a slight hook at the end, which may look like a bird's beak.
• Large eyes and eyelids that don't close completely.
• Hair loss, including eyelashes and eyebrows.
• Thin, spotty and wrinkled skin.
• Veins easily seen through the skin.
• High-pitched voice.
• Premature aging.

They advise: "If you notice changes in your child that could be symptoms of progeria, or you have any concerns about your child's growth or development, make an appointment with your child's health care provider."