February 3, 1976 - November 30, 1996
My son Kevin had Friedreich's ataxia (FRDA). He was diagnosed when he was a seven-year-old second grader. Clumsiness was his only symptom. Kevin developed scoliosis (curvature of the spine) and the enlarged heart (hypertrophic cardiomyopathy) common with the diagnosis of Friedreich's ataxia. He used a wheelchair for mobility and a computer to write.
Kevin was a fighter and fought to the end. He graduated in the top ten of his high school class and was taking college correspondence classes (majoring in accounting) at the time of his death. He had a B+ average. He was an avid St. Louis Cardinals fan and could quote any statistic about them you wanted. He also loved country music.
Death was very sudden. I came home from work and he said he wasn't feeling well. Flu was going around. By the next morning, I felt in my heart that there was more going on. I took him to the ER at our local hospital and they immediately transferred him to Children's Hospital. Within an hour of being there, he was placed in ICU; within 12 minutes he was in critical condition. We lost Kevin on that first night, but they brought him back with CPR. They placed him on a heart / lung machine with the hope that, if his heart didn't have to work, it might heal. After nine days, he was in organ failure. We made the very painful decision to remove him from the machine. Kevin was age 20 when he passed away.
I have two more children with Friedreich's ataxia and I daily wonder if and when this disease will take them away from me too.
It is my hope that telling Kevin's story will encourage others to support FARA's effort to accelerate research to help my other children and the many other families coping with Friedreich's ataxia.
Thank you from Connie,