What Is FA?

 This disease is a neurological degenerative disease.

What does that mean? Well to some they see the outside of the disease what they see in Tracy.... Oh not so bad.. He can't walk well, he slurs and it's hard for him to do normal daily activity with ease. Things we all take for granted. It's so much more than what we see. It is molecular. It is genetic. It is absolutely not curable at this time. Why is that an important fact, that it is not curable? Well with any illness we long for a cure so our loved ones do not suffer and can live a long comfortable fulfilling life. FA is life long so the torture of it is constant. We tend to get use to the disease and comfortable with the way things are. At a young age we see 50 as old. At a mature age we see 50 as still young. Well the life expectancy for an FA patient is 50 years old.

Some say well wow that's still a good life. Well considering your struggles with the disease prior to this time it's really not. In the back of Tracys mind he is constantly thinking oh I will feel better tomorrow and I can play with my grandbabies visit with my children or visit with nieces nephews siblings. Sometimes those days don't come. Sometimes it feels like the days are wasted on just simply existing. Sad but true. 

Then one day he wakes up feels pretty good and he is mad because the days got away from him and he has lost 5/6/7 days of precious time. That's were I come in with optimism and try to help him cram everything he can into one day before the disease takes him down again. Overwhelming is an understatement. Somehow we push through. It has become the new normal. When those days don't come and I am left here just watching and waiting for that day of strength. Those are the days I sit and feel absolutely worthless. Defenseless to this destructive disease!