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HD has been in my life for as long as I can remember. I don't know when I actually knew what my grandfather had was "Huntington's disease", but I remember always knowing he was sick. I remember hearing my family talk about how his mother, my great-grandmother, had the same thing.
My grandfather had a later onset of the disease and my grandmother took care of him in her home, hospital bed and all, until she couldn't. I remember being at my grandfather's funeral and how sad I was to have lost him as a young girl in grade school and not quite understanding why he died, but I knew that he no longer was suffering.
I was very young when my parents divorced and they both ended up remarried. I was the flower girl in my dad's wedding to my amazing step-mother, Jody. When she was pregnant my dad underwent genetic testing to see if he carried the gene for HD as a promise to her parents. His results were positive. I don't think it was a big surprise to any of our family as we had already noticed some changes in behavior and mood swings prior to testing. I was 6 years old and he was in his early 30's, much younger than his father was when he started showing signs of HD.
I grew up in my mom's house but spent every other weekend, summers, and saw him frequently during the school year when he would come to softball games or band events. It was getting dangerous for him to drive and he was a semi-truck driver for a career. He was always behind the wheel, and when we needed to make him stop driving that also meant working for him, too. I was in the 8th grade the year my dad was home permanently.
Our family has been involved with the Central Ohio chapter of the HDSA for as long as I can remember. My grandmother, myself, and even my great-grandmother have all volunteered at the Center of Excellence at Ohio State, participated in Hoop-a-Thon's and amaryllis sales. This past weekend on October 20th, 2013, my 26th birthday, I completed the Columbus Marathon - all 26.2 miles, in honor of my dad. I used FirstGiving and raised nearly $1200 in his honor. I did the Columbus half marathon on October 16th, 2011 just two days after receiving my own genetic test results. I tested negative of October 14th, 2011 and will never forget that day. The weight of the world was off of my shoulders but that feeling quickly went away knowing how many around me in the chapter and in the NYA didn't get such good results. I knew I had to push forward and never give up the fight to find a cure, so I continue to raise awareness and fundraise.
Where are we now? My dad has lived in a nursing home for the last 5 years. I remember the day we told him we were going to take him there and it wasn't safe for him to be at home alone while we were away (he would often try to cook or shower when he would get up and he had often fallen, burnt food and utensils on the stove). It was one of the hardest things our family has done but it was in his best interest for his safety. He will turn 54 this November 10th and has good days and bad days. He has been bed or chair bound for the last year or so but surprised us just a week or two ago when he was upset (and he gets strong when he's mad!) and got up and started walking out of no where. The nursing staff quickly got him a walker and let him do his thing. Some days he's so weak he can't get words out or feed himself at all, some days he surprises us and smiles and talks to us. We have had hospice in for the last several months due to his constant choking and pneumonia from aspiration. He has been a DNR for a long time and does not want a feeding tube so we do what we can and let him eat what he can tolerate for as long as he can manage. I have a younger brother, Tyler, who just started his freshman year of college and is 18. He also wants to be tested but I waited until after I was finished with college, had a job and life insurance set up before I was tested and are hoping for him to do the same thing.