Growing

I was hit with debilitating, dream crushing news when I was just 13 years old. 6 years ago around this time of year I was diagnosed with a rare, neromuscular disease called Friedreich's Ataxia which has no cure or treatment. For the next 5 years I went through a period where I did not want to talk, hear, or even think about FA. In my mind if I did everything I could to ignore it, it would eventually go away. Everyone that I have talked to with FA says they go through that phase and for some it lasts longer than others. That phase of hopelessness, loneliness, and denial. 

I had always been curious what the FA community was, and then one day I decided that I didn't want to live like this. Little did I know my life was about to become a whole lot brighter. I slowly started following people with FA on instagram and dipping my toe into the water. I began to understand the importance of being a patient advocate, and raising awareness for an FA. 

I now participate in clinical trials and studies, I lead patient support groups, and I am always willing to raise awareness. Never in a million years did I think that I would be doing what I am doing today and I feel like I am only starting. I know I wouldn't be where I am at without my family, friends. the FA community, and my almighty God.

Just know that whatever you may be struggling with, or however deep the hole you're in. There is a light at the end of the tunnel and there is always a way out, and everyone grows at different rates.

For I know the plans I have for you, "declares the LORD" plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11