Eric Dagley Frisco, TX 22 Votes
My wife Lisa and I are the parents of two sons that have Friedreich’s Ataxia (FA). FA is a progressive, degenerative disease that affects the spinal cord, peripheral nerves, the function of the cerebellum, and the heart. In some patients like Jason and Alex, it takes away the ability to walk, creates difficulty with speech and swallowing, and causes hypertrophic cardiomyopathy.
Our journey started when Jason was about 5 and began having problems with coordination. Over the next several years, we searched for answers as his symptoms got worse. During that time, Jason was misdiagnosed ad went through a series of test and treatments that were not successful but painful and difficult for him. In 1995, we found doctors that helped us find an answer. Unfortunately, when we finally found the answer for Jason, we were told that patients like Jason rarely live longer than 25 years, and also found out that Alex had FA. That same year we started working on learning everything we could about FA and trying to raise money for research and a cure. We stayed positive and got stronger as a family, and in 1996, we received an Outstanding Family of the Year award from Family Services of Greater Baton Rouge. In November of 1996, we were in a head-on automobile accident that nearly killed us all. Jason was thrown from our van and had a life threatening open skull fracture and broken arm. Lisa, Adam, and Alex had broken bones and cuts and bruises that were severe. I took the brunt of the impact and had 9 broken bones and a ruptured spleen, but we all survived. In 1999, I was laid off from my job at a time that the boys were suffering from severe scoliosis (another by-product of FA). Between the medical bills and loss of job, we became financially bankrupt. We managed to find a way to get both boys through scoliosis surgeries, and Jason was nearly killed by a staph infection. However, with faith, hope, and love, we fought our way back and managed to secure a loan to buy our first accessible van in 2003. We now have had that van for 10 years, and need a replacement. Jason (28) and Alex (26) live with us and require our daily care. My family has survived many challenges and will continue facing each day with hope and a smile!