My Diagnosis Story with Friedreich’s Ataxia (FA)
Hello, my name is Kelly Hennessy, and I was diagnosed with FA when I was in high school. I had a normal childhood, although I wasn’t much into playing sports. My family likes to travel and to be active. When I was 7 years old I went to an art class and loved it, especially painting with oils, which sparked my interest in art. In middle school, I started watching food shows so I took a cooking class which was great. I started baking and continued to take cooking in high school as it was “my thing”.
During high school, I was always a little slow-moving and would always be walking behind my friends. Soon I could see my feet walking funny and I couldn’t really fix it. I went to my mom and told her how hard it was for me to walk long distances. My brother Zack had already been diagnosed with FA, so she suspected that I had the same thing as it is a genetic disease. Zack’s doctor is a specialist in FA and practices at UCLA Medical Center. When he went down there from the Bay Area for his appointment, I went too so I could get a blood test to see if I definitely had FA as well. When I officially found out that I did have this disease I was really sad about it. I was kind of OK with it because I had been seeing Zack dealing with this every day of his life since he was diagnosed. He seemed to be doing alright. But then I remember my mom and Zack said, “You might end up in a wheelchair someday”. Then it suddenly hit me that this was not ok and I was very upset.
It was not easy and is still not easy. I struggled as my walking became more difficult over the years but I was determined to walk on my own for as long as possible. Then I had to hold onto someone’s arm. Then I had to begin using a walker. Sometimes it is now difficult to use a walker but I am really trying hard to stay upright and not be in a wheelchair just yet.
I have always had hope for a treatment or a cure. I will never give up on that hope and dream that there will be a cure for FA someday. Even though I know that at some point I will be in a wheelchair I will always still live life to the fullest. My life will be different but I am adapting to what opportunities work for me and look forward to what the future holds. I will never give up hoping for a cure. And I will never give up trying to be the best I can be.
