Sunday, June 21, 2009

Too old too soon

This week, I have read a book that really touched me. It tells the story of Michiel and Amber, both suffering from the rare disease progeria. Worldwide 45 children have this condition and most of them don't grow older than 13, although there are exceptions.

Children with progeria have bold heads, a sharp nose and stiff joints. They don't grow very tall and they don't grow old. But they have sparkling characters, are full of humor and tend to win all people's hearts.

The mother of Michiel and Amber invites the reader in their life, telling us about the birth of both children, the diagnosis, the disbelief when their second child had the disease too, although doctors told them not to be afraid to have another child with progeria. Because there has never been a family with multiple children who had progeria. Unfortunately Amber also got progeria. Michiel doesn't understand why people are so sad that his little sister has the same disease. He has the disease too and he's okay? So why cry over Amber? Can an 11 yo realise death is around the corner..? He knows some of his progeria friends have lost the battle. He knows he doesn't want to be buried. He wants to stay with his family, even after death..

Michiel is so clever and bubbly and he has a vibrant personality. He is much bigger than other people will ever be. It doesn't matter that he's short, his heart and mind are big enough.

Michiel's wants to become a professional soccer player. He's full of dreams. He doesn't wish for progeria to go away, because progeria is part of who he is. He wouldn't be Michiel without progeria... That says it all.

Godelieve and Wim, the parents, will never see their children as adults. They will not have weddings to prepare, no grandchildren to welcome in their loving home. They make the best of the time given with Michiel and Amber. And they do that in the best possible manner. Respect... nothing but respect for this loving family. For the way they keep going and for the love they give these wonderful, unique children.

Michiel has travelled to the US several times now, to visit his progeria friends and to attend a special programme on progeria research. He's quite a celebrity in our little country.

I would like a moment of silence, to think about this family and their lovely kids. Keep them in your prayers.. and wish them the best life they can have.
www.progeria.be


No comments: