Face of Flanders – Michiel Vandeweert

Summary

The big Flemish name in Germany these days is not big at all. He's about a metre 10, weighs around 15 kilos, and he's bald, even though he's not yet 11.

Michiel Vanderweert
 
Michiel Vanderweert

An 11-year-old boy from Limburg is charming crowds and fighting to beat the odds

The big Flemish name in Germany these days is not big at all. He's about a metre 10, weighs around 15 kilos, and he's bald, even though he's not yet 11.

Michiel Vandeweert suffers from progeria, a disease that leads to premature ageing and, while medical science may not expect him to live much longer, he and his family have other ideas.

Progeria, short for Hutchinson-Gilford progeria syndrome, is a genetic disorder affecting one in eight million people. It is characterised by distinctive facial features, paper-like skin, baldness and stunted growth. Progeria patients have a small, fragile build and resemble little, old people. They suffer from atherosclerosis and heart problems but not other ailments of ageing, such as arthritis and memory problems.

Progeria patients do not live very long; the average life expectancy is about 13. There are currently 52 known cases of progeria children in 29 countries across the world, according to GlobalHealthPR. The health communications group recently launched a worldwide campaign to increase awareness of the disease and perhaps unearth the 150 cases they estimate are still undiscovered.

Michiel Vandeweert was born in Hasselt in 1998 and, in 10 day's time, he'll be 11 years old. According to his parents, Godelieve and Wim, writing on their own website, Michiel was frail from the start, ate badly and had severely dry skin. Repeated visits to specialists revealed nothing unusual.

Then Michiel's lack of height and weight - at the age of four he weighed only nine kilograms - and his thinning hair rang alarm bells. Finally, after researching the subject themselves and meeting the parents of another affected child in the Netherlands, they forced the doctors to admit the diagnosis of progeria.

Amazingly, Flanders has four progeria children, and all of them live in Limburg: Toon, now aged seven, and Matz, whose parents have decided not to seek the publicity the other parents use to campaign for awareness of the disease.

The fourth victim is Amber, born in February of 2006 not only appearing robustly healthy but also declared by the doctors to be so. But Amber's hair started to fall out, and, though they were convinced it was an impossibility, her parents insisted on genetic tests right away.

The tests came back positive and forced the doctors to rethink their knowledge of progeria. Amber is Michiel's sister, and such a thing should never have happened. Although identical twins with progeria have been born in the past, the Vandeweerts are the only family in the world, to the knowledge of medical professionals, with two progeria children of different ages.

For the Vanderweerts, life goes on. Michiel is undergoing experimental treatment in Boston, which has led to growth in centimetres rather than millimetres, and his health is holding up. At a benefit evening in April in Sint-Truiden, former Prime Minister Guy Verhofstadt handed over €10,000 raised by volunteers to help the family pay the huge bills involved in Michiel's treatment. Part of the evening was a reading by Michiel himself from the book by journalist Marijke Vrijsen Ga ik dood als ik twaalf ben? (Will I Die When I am Twelve?).

Michiel's German stardom came about when he was taking part in a production called Pirate der Liebe (Pirates of Love), which was presented by progeria children from all over Europe in Stuttgart. The German media just happened to be there, and they proclaimed Michiel "Einer der grösse Stars des Stücks" (one of the biggest stars of the show).

"To be honest, you could hardly fail to notice our Michiel," proud dad Wim explained to De Standaard. "I have to say, he really stole the show. I knew all along my boy was a charmer; now they know it in Germany too."

www.progeria.be

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Face of Flanders – Michiel Vandeweert

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