About Fragile X
"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 21 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.
Mary Jane hopes to raise public awareness of Fragile X through her books. In Do You Want To Know A Secret
, a character with Fragile X holds the key to the mystery, in Close To You
, the characters attend a fundraising ball for Fragile X and subsequent books have been dedicated to those affected by Fragile X Syndrome.
Official site of the FRAXA Research Foundation
Feature on Fragile X on the Dolan DNA Learning Center multimedia guide to genetic disorders