When my mother was 41, she found out that her mother had died of HD. My father had already died of a heart attack, leaving her to raise four children in poverty. Now she had to deal with the news that her twitching, balance and memory problems were signs of a fatal disease, and that each of her children had a 50 per cent chance of inheriting it.
For the next two decades, my siblings and I watched HD take away her bodily functions, her memories, her personality and her dignity.
Not long after Sharanie and I got married, we decided that I should get tested. Finding out I had the gene, as horrible as it was, at least allowed us to make the right decisions and plan for the future.
When Sharanie got pregnant, we had Nicole tested in vitro. Finding out she didn’t carry the gene was the happiest day of our life. It was like winning the World Series. When I kiss my daughter goodnight, I can tell myself that she’ll never have to deal with this disease.
She’ll have to deal with me, of course. I would change that if I could. But at least she never has to look at me and think, “this is my future.” She never has to worry about developing HD or passing it on to her future children. In my family, the disease ends with me.
Huntington’s is a horrible, horrible disease. It affects your memory. It affects your personality. It takes away your dignity, and it destroys families. But I really do believe that in 10 or 15 years, researchers will find a way to delay the onset or stop it from progressing. They may even cure it, but just giving people an extra 10 years would be huge. Investing in research gives families hope — and having that hope is just so, so important.
When my dad was no longer able to work, my parents decided to tell me about the disease. I was 11. It was the beginning of the worst year of my life.
The hardest thing to take was when they told me what would happen to my dad. I had seen what my grandmother was like, and honestly, it terrified me. The worst symptom for me was the memory loss. It wasn’t so bad that my dad wouldn’t remember little things, but mainly that one day he wouldn’t remember who I am. He’s been my best friend since I was a little kid.
My only wish is for my dad to get better and to be in my life for just a few extra years. When I was younger, I thought that if I wished on a star enough times, eventually my wish would come true. Now I know that the only way this wish will come true is with your help.