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XAVIER
Xavier is now two and a half years old. When he was born, we couldn’t have guessed what lay ahead for him: he was a beautiful baby (the most beautiful baby in the world, of course), 3.2kg, nearly 51cm, amazing blue eyes, light chestnut hair like his mum.
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However, it was soon clear that he wasn’t putting on weight properly and that he lacked muscle tone, slowing down his development. This didn’t affect his good nature and joie de vivre. He remained active and smiley and never stopped amazing his parents with his dynamism and his boundless energy. It was only when he was almost 2 years old that the doctor’s verdict was delivered and Xavier’s parents were devastated. He was diagnosed with late-onset “Krabbe’s Disease”. |
It’s a rare illness that attacks the nervous system. In Europe, there are few recorded cases like Xavier’s, only one of which is in the Benelux countries. According to the specialists consulted in Belgium and France, there is no treatment and the illness is terminal.
For Xavier’s parents, there was no question of them simply waiting for things to follow their course and, after much research on the Internet, they decided to take him to the United States where more is known about the illness. The trip cost them a fortune (they had to borrow quite a large sum of money), but they found out during the trip that a stem cell transplant would give Xavier a 70% chance of survival. However, it wasn’t possible to have the operation there because of the insurmountable cost.
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It was therefore decided to do it in Belgium and in the end the transplant was carried out on 17 February 2005 at the Saint-Luc University Clinics. Xavier is of course still in hospital and the treatment will continue for a long time to come. You can read all about his story on the website created by his maternal grandmother. Whatever happens, anything you can give will be very welcome to help this child who just wants to live a normal life and his parents are ready to sacrifice everything to save him. |
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