This is the 20-year-old man who looks old beyond his years after suffering from the rare ‘Benjamin Button’ ageing disorder – but he cannot get benefits as dole bosses say the condition is not real.
According to local media, 20-year-old Michiel Vandeweert has already outlived the average life expectancy of just 12 years of age for sufferers of the genetic disorder progeria.
Often referred to as the Benjamin Button disease, after the F. Scott Fitzgerald short story and movie adaption ‘The Curious Case of Benjamin Button’, the condition causes sufferers to age eight to 10 times faster than normal.
Astonishingly, Michiel’s parents Wim and Godelieve, who were told by medics that it was next to impossible to conceive another child with the same rare condition, gave birth to daughter Amber who also has progeria.
The singlings make up two of the total 155 cases of the disorder known around the world, according to reports.
Michiel, 20, and Amber, 13, are just like other people their age except their bodies are significantly smaller and they suffer from different conditions due to the rapid ageing.
However, Michiel now faces the problem of whether to go to university or find a job, both of which are not a viable option for him because it means planning for the future.
He said: “Normal children finish their secondary education and continue to study. I don’t see continuing my studies as an option. I cannot make a future for myself, I have to look at the present.”
According to reports, the Belgian authorities have refused Michiel the right to claim disability benefits because he is not classified as someone who is either physically or mentally handicapped.
His father Wim said: “The questions [during medical checks] are mostly like, ‘take a step, can you jump, walk up the stairs, take a pen and write something, read this’.
“But our children can do all of this. The problem lies with the questions being asked, they are only tailored to the two common categories.
“My children fall outside of these two categories, although they do have a number of other problems, such as their height and weight.”
According to reports, Michiel worked in a computer store after finishing high school at the age of 18, but being just 4-foot-1-inch tall, it turned out the work was too heavy for him and he was forced to stop.
Bizarrely, in Belgium’s social security system he is also not eligible to for benefits as he is not yet 21 years old.
Maggie de Block, Belgium’s Minister of Social Affairs and Health, has reportedly stepped in to campaign for a third category to be added so that Michiel and Amber might benefit from it.
MEP Hilde Vautmans, who like de Block is a member of the liberal ‘Open VLD’ party and has taken up the cause as well, said that the legislation would also benefit those suffering from a number of other conditions.
Vautmans said: “We are looking into whether other rare diseases can be eligible for benefits. We are also considering people who suffer with autism.”
South African national Leon Botha, who lived until the age of 26 before his death in June 2011 of a stroke, is the oldest known sufferer of progeria.
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Story By: Koen Berghuis, Sub-Editor: Joseph Golder, Agency: Central European News
