It was June 2011 when our family learned of Friedreich's ataxia. We were not fortunate enough to learn of the disease through an article, a blog, or an event. We learned the hard way, with a neurologist giving us the name as the diagnosis for our 16 year old son. On that day, it felt as if we hit a brick wall going 60 miles per hour. We are the parents. We are supposed to fix everything and make everything better. But the hurdle in front of us seemed impossible. If life could be compared to a boxing match, I felt like we were down for the count.
Thankfully, with the love and grace from God, He empowered us with renewed strength. We pulled ourselves together and stood back up. We were not going to give up. We were going to keep fighting anyway we could. With no treatments and no cure, we felt helpless. And that is when we realized doing nothing was not going to be an option. We wanted to find an avenue to educate others about FA while raising funds for FARA.