 Hello friends and welcome to the Foundation for Shaiel.
A site dedicated to raise funds for a terminally ill child in Costa Rica.
My name is Hans and I moved to Costa Rica a little over two years ago.
When I planned to move to this country most of the people I knew thought
I was a bit off my rocker. I knew absolutely no one and spoke very little
Spanish, but some how I knew it would all work out. I have to say
I was a bit anxious when I walked off the plane in CR, but one smiling
face put me at ease very quickly. As I stepped out of the airport
exit door I was greeted by my taxi driver Raul, he spoke to me in English
as he loaded my bags into to his car. Long story short two weeks later
I found myself at his home having dinner with his entire family, including
his lovely two year old son. Over the next two years my friendship grew
with Raul and his family. We spent many hours together at my home, his
home and at his mother in law's restaurant. About three months ago Raul
and his wife noticed that their son Shaiel had developed a slight limp
and it wasn't going away. After many trips to the doctor and just as many
tests the final diagnosis was not good, Metachromatic Leukodystrophy.
What is Metachromatic Leukodystrophy?
Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies. These diseases impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least 10 different enzymes. The leukodystrophies are caused by genetic defects in how myelin produces or metabolizes these enzymes.
More information can be obtained by going to one of the provided links on this website. The sad fact is there is no cure to date and this disease will slowly and painfully take the life of this child. Please help us make this child as comfortable as possible during his ordeal. Any donations you can make will be most appreciated by Raul and his family. Thank you for your support.
|
