| DONATIONS | CONTACT |
|
NEWS: The good news...no
the great news is that the doctors in Minn have determined that Shaiel
does not have MLD...the bad news is there is still something wrong with
his brain...they are just not sure what at this point...they are leaning
towards whats called Vanishing white matter disease...from what I am reading
this will be no picnic...if he does have this he may live to be 30 with
many health problems at best...but we don't know anything for sure right
now....and so for this reason we are suspending all collections...we don't
want people with their wonderful imaginations to think we are up to any
funny business..the raffle for rocky point will be canceled and peoples
money will be returned...thanks to all of you we have been able to send
this child to Minn for the advanced medical evaluations he needed...give
yourselves a pat on the back...once again I thank you and the family thanks
you for all your help...
Hans
P.S. Here is a link on WMVD if you would like to read up on it... http://www.ulf.org/types/VWM.html
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.