Return to the world of a child that has your name. Many thanks to Michelle Hardt Thompson and Pat Leslie. --Jerry

Contributing Editor's Comment: One of the purposes of "Afraid" is to help parents of "at-risk" children talk to them about the many fears they may face after witnessing firsthand their parent becoming symptomatic. In addition, hopefully her book will stimulate and encourage the beginning of open and positive dialog about Huntington's Disease, as early as possible, in order to assist families in no longer being afraid to teach their children, not only about the disease, but about its inherent risks and how to prepare in order to minimize them. I hope it becomes a valuable resource to families to plant seeds as early as possible, hopefully years before they begin making major life decisions such as whether-or-not to enroll in college after High School, which company to work for- one that offers group health benefits or one that doesn't, and when to marry and start a family.

Families need to realize, that by doing this they are in no way admitting that their at-risk children will get HD, they are simply being proactive by trying to minimize the financial and emotional damage that can result from HD if they fail to adequately prepare them. We can no longer bury our heads in the sand and hope for a better day- WE must take responsibility for that day NOW for ourselves and for our loved ones. We can no longer continue to play the ostrich that places its head in the sand and pretends that the 50% risk of them inheriting it will somehow go away. Simply put- we must help them to prepare like they will inherit HD without letting that interfere with their daily living because if they are gene positive, once they become symptomatic, it will be too late to finish their education, change jobs or secure adequate insurance.

I wish with all my heart that we didn't have over 250,000 individuals living today who are at-risk, but we do, so lets look it right in the face, together! --Phil Hardt

Posted to HDLighthouse: 02 Nov 2002 12:53 HDL Update: AFRAID, A book for children 'at risk' for Huntington's Disease

"Sometimes I cry because I don't like how he acts with the disease. My mom says it is OK to be afraid."

AFRAID

A book for children "at risk" for Huntington's Disease

Written by: Michelle Hardt Thompson
Illustrated by: Pat Leslie