AFRAID A book for children "at risk"
for Huntington's Disease
Written by: Michelle Hardt Thompson- gene negative
Illustrated by: Pat Leslie- gene positive

CREDITS

Thank you to Pat Leslie (illustrator), Phil Hardt (my father and mentor- gene positive), Gayle Wilkenson (literary consultant).

Thanks also to these friends and translators: Paola Barbato (Italian), Yoko Aoki (Japanese), Adam Thompson (Japanese), Alan Thompson (French), Enoch Thompson -my loving husband (French), Laura Newsom (Spanish), Andrea Thompson (Spanish), Seth Thompson (Portuguese), Sarah and Roland Hecht (German), Joan Ahrens (Dutch), Hyun Ju Lee (Korean), and all others who have helped in any way.

 

 

My dad has a disease. Sometimes I get mad because he can't play with me like he used to.

 

Sometimes I cry because I don't like how he acts with the disease.

Sometimes I am embarrassed and don't want my friends to see how he acts and looks.

Sometimes I am Afraid. My mom told me that I am "at risk" for the disease. That means that I might have it too. I'm scared that I will have symptoms like my dad when I get a little older.

But my mom says it's OK to be afraid. She says that everyone gets afraid sometimes of things they are unsure of or that they don't understand.

My dad has Huntington's Disease. It makes him forget lots of things. Someday he might forget my name. I am afraid that if I have the disease, I will forget my friends and family.

He's starting to talk funny too. Mom says that it is called stuttering. It's hard to understand him sometimes, and it takes him a long time to say things. I'm afraid that I will talk funny too, and others will be bothered by it when talking to me.

 

HD also makes my dad's muscles twitch. He drops things a lot and sometimes has to walk with a cane. I'm afraid that if I have the disease that I won't be able to do things like skate, or play soccer any more. I'm afraid that I will drop things and people will get upset at me.

 

Sometimes the disease makes my dad's muscles really tight, and he can't move them. I'm afraid that if I have the disease I won't be able to move my arms and legs when I want to. People might make fun of me.

My dad yells at me more too. He gets mad all the time. My dad says that the disease makes his brain sick.

It makes it so that he doesn't realize that he is yelling so much. I get scared when he is mad. I'm afraid that my dad doesn't love me any more, and that if I have the disease, I might be mad all the time too.

Dad has to relax more now too. He watches a lot of TV because he can't drive or go to work any more. Mom says that too much stress or too many things going on makes his symptoms worse. I don't want his symptoms to get worse.

I used to play soccer with my dad. I love my dad - but he is different now. I miss how my dad used to be. I'm afraid that I will be different someday too. I don't want to be different like my dad.

 

 

My mom says it's OK that I am afraid, but that I should still be happy. She says that there are things that I can't control, but there are some things that I can do to help me not be afraid so much.

I can learn about Huntington's Disease so that I can be prepared. I can write happy things in a journal. Then, I will have my memories written down, in case I forget them.

I can exercise and make my body healthy. And I can learn a lot in school. Mom says that knowledge is important and will help me to grow strong on the inside. And if I learn a lot in school, when I am older, I can get a good job with health insurance. Mom says that health insurance helps to pay for all of his medical bills and that sometimes doctors cost a lot of money.

 
Another thing I can do is help others. Helping others with their hard things will help me to think less about my hard things.

Maybe I can volunteer and people will be happy and thankful for what I can do.

I can tell others about Huntington's Disease. The more I tell others about my dad, the less they will be afraid and upset about the things that he does. Maybe then I won't be embarrassed of him. I love my dad.

I love my family. It is hard sometimes because my dad has Huntington's Disease. But I am not alone. Lots of people are at risk for a genetic disease, or have parents with a genetic disease. Maybe I can help them to understand too, so that they don't have to be afraid so much either.

My mom says that everything will be OK. It's OK to be upset and afraid. And it's OK to talk to someone about how I feel. I don't have to let my fear of having Huntington's Disease stop me from living my life as happy as I can.

If you have any questions, or would like to learn more, you can have your mom or dad call a Huntington's Disease Society in your area. Maybe then I can share more with you of what I know. Mom says that knowledge is power, and power is hope. And with hope, we can help each other to not be afraid!

Daddy
By: Michelle Hardt Thompson

I remember how you used to be a soft word or a kindly deed you used to take me to soccer games we used to laugh, we used to play we'd sing at the piano, for weddings, for shows questions about scripture, daddy knows a harsh remark and resulting tears a swift apology, happy years you worked so hard, you sacrificed you loved to learn and read and write a humble home, a simple style a stubborn heart, a gentle smile you knew my weakest points but still you let me choose, my own free will I learned so much, you never knew your pride, and expectations too

I laugh at how I used to be yet somehow I know that inside of me I find a part of you so bold and in my heart I'll forever hold memories of our family, you and I the single time I saw you cry I know that underneath our fears we forget the sweet times of past years so with frustration and fate alone patience is dull - but faith never grows old. I love you