Felicity Cowlin

Team Captain Pat's Parade Chico, CA Team Hope Walk

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My father was diagnosed with Huntington's Disease about 5 years ago. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

I remember when Dad started getting into little fender benders. Those became more and more frequent, then one day he came home with his windshield completely smashed explaining that he didn't see the traffic gate coming down at the train tracks. That started the long investigation. First it was Aspergers, then Parkinson's, and finally it was narrowed down to HD.

This brought up some concerns for myself and my siblings. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. After a great deal of self-reflection, and with a huge amount of support from my friends and family, I went in to get tested. I still remember that feeling of relief when the doctor called me on Thanksgiving morning to tell me I was negative.

This was indeed good news, but it didn't change the fact that my Dad was still going to be slowly taken by this disease. It didn't keep the doctor from telling my mother that she should prepare herself mentally and emotionally to feel like a "single parent". Over time the disease has progressed in my Dad, and for my mom and siblings, so has the hardship. It is unspeakably difficult to watch the father/husband you knew slowly lose themselves. It is difficult realizing your little sister never got to know him before HD took over. It is difficult watching your mother carry on so bravely when she carries the heaviest of the burdens this disease brings.

Still, I have to hope for a cure. For my Dad, for my brother and sister (who have not been tested), and for the hundreds of thousands of other families suffering from HD.

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