"For
David, my loving and loveable son, and all those who
struggle with Fragile X Syndrome ... with great hopes
and fervent prayers for a cure"
As some of you may know, Mary Jane Clark's son has
Fragile X Syndrome, the most common inherited form of
mental retardation.
"When David was diagnosed 13 years ago, I, like so
many other people had never even heard of Fragile X
Syndrome," remembers Mary Jane. "At the time I thought
it was the end of the world. But it wasn't. It was the
beginning of a new one, and, while not always easy,
a very rewarding world at that. While I still wish Fragile
X didn't exist, David is a great boy and I feel blessed
to have him. He has taught me a great deal. And Elizabeth,
his sister is a hero in her own right as she has coped
with having a sibling with a major league problem. They
are both champions."
Fragile X, which is caused by a gene defect on the
long arm of the X chromosome, is estimated to affect
1 in every 2000 boys and 1 in 4000 females of all races
and ethnic groups. Symptoms include mental impairment,
attention deficit and hyperactivity, and autistic-like
behavior. Research has shown that about 1 in 259 women
carry Fragile X and could pass it to their children.
Since 1994, Mary Jane has served on the Board of Directors
of the FRAXA Research Foundation, a non-profit group
that supports scientific research aimed at finding a
treatment and a cure for Fragile X Syndrome. Through
her books -- first Do
You Want To Know A Secret and then Close
To You -- Mary Jane is trying to raise public
awareness of Fragile X.
Related Links
Official
site of the FRAXA Research Foundation
Feature
on Fragile X on the Dolan DNA Learning Center multimedia
guide to genetic disorders