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I want to tell you how Huntington's Disease has affected my life.
My dad died from HD in 2006. He didn't just die, he suffered. He lost all emotional stability at first, then the physical symptoms started. He could no longer hold things. He couldn't walk straight until he finally couldn't walk at all. He couldn't talk anymore and couldn't swallow his food or drink. He lost all of his body fat and muscle until he looked only like a shell of a human being. All he had left was the ability to look at me and tell me with his eyes that he loved me. He had to get a feeding tube to keep him alive but he quickly grew tired of the tubes and the pain and let me know, with his eyes, that he was ready to go. He died three days after the feeding tube was removed. Me, my mom, and sister, sat around dad for eight hours until he took his last breath. That was the most devastating day of my entire life. I had never watched someone die before, especially someone as important as my dad. My dad was a retired Senior Chief in the Navy and he was always a comedian. He was 57 years old. I miss him the same today as I did six years ago.
Currently, my sister is struggling with Huntington's Disease. She was always so perfect at everything and so pretty. She always did everything right while I was getting in trouble. She graduated from college and started her career as a Chemical Engineer, but it was quickly taken away by Huntington's Disease. She is doing her best to be a great mom to her teenaged son, but even the simplest of daily tasks are impossible for her now. She knows what HD is because we watched our dad go through it, but I think there may be some denial on her part. After all, who would want to acknowledge the road that HD has paved? I couldn't. We barely talk these days because she doesn't communicate much anymore.
I am at risk and have a 50% chance of developing Huntington's Disease. I have not been tested yet because I am too afraid.
My mom, Marie Clay, has become obsessively active in the HD community and gives countless hours to spread awareness and to help families trying to deal with Huntington's Disease. She is an inspiration to me and my kids, and to many others. She has shown strength when most would want to crawl in a hole and hide. She watched her husband succumb to this disease and now has to watch her daughter struggle and suffer, but she keeps pushing. She pushes for fairness, awareness, changes to the laws, changes to Social Security, and most of all, she pushes for hope. I love her. I am proud of her.
Nothing can be done alone. Thank you for helping.