When Hannah was first diagnosed, I wanted to test Austin. Jason was strongly opposed. The neurologists suggested that we not test an asymptomatic sibling as there was no treatment. As the shock wore off, I agreed with Jason knowing full well that I didn’t think that I could handle it. And so, for the last 3 years we’ve watched and prayed that lightning wouldn’t strike twice.
In the Spring of 2012, Austin started soccer. It was absolutely torture to watch. He’s a bit on the shy side and just would never engage in the game. While watching, we began to notice something about his feet that looked all too familiar. I remarked to Jason during one game that I didn’t like his feet at all. Jason agreed.
Several weeks later, I picked Austin up from preschool and we needed to rush to Walmart to get a few things for all the end of school activities. I tried to hurry Austin along so that we could get back to the bus to meet Hannah. As he hurried along in front of me, he attempted to skip. I stood frozen in Walmart. I had seen that “skip” before. I knew that “skip”.
That evening I told Jason that I thought we needed to test him. Much to my surprise, Jason said, “I’ve been thinking that since Austin’s second soccer game.” I contacted Dr. Lynch, Hannah’s neurologist, the next day to schedule the testing.
On May 31, 2012, we learned that although each of our children had a 25% chance of having FA, we now have 2 children with this horrible disease.
June 2014 Update:
Austin had a great kindergarten year and is doing quite well! His disease is not nearly as progressed as Hannah’s was at his age. He is still very active and enjoys playing baseball. His baseball team won the championship!
Even though it’s easy to pretend that FA will not strike him, too, we sadly have noticed the beginning of scoliosis with him. With all of the exciting research taking place, we continue to remain positive and pray that we will have a treatment in place before FA becomes too severe. “Together, we will cure FA!”