My name is Elizabeth Bowen. I was born and raised on Hilton Head Island, South Carolina. I was first diagnosed in 1998 when I was 14. I am the oldest of four and no one else in my family has had FA.
When I was 12, I wanted to be on the basketball team at school, so I went to get a sports physical and the doctor told me that I had scoliosis. My parents then took me to a doctor to address the scoliosis and due to reports of my lifelong lack of coordination and balance, what they thought was simply clumsiness, and movements the doctor noticed that I made, lead the doctors to think that there might be something else wrong and ended up testing my DNA and finding out that I had Friedreich's Ataxia. I played soccer at the time and for a while after. I also did join the basketball team when I was 12, but I turned out to be terrible at being on the court, lol.
From a very young age, I knew I always wanted to be a mother. I knew without actually knowing that I would have to accomplish this young, due to physical reasons, I wanted to be there for my babies. So, I got married when I was 19 and had my first child when I was 21. Young, but not too young. When my first child was about 5 1/2 months old, he began to get a little bit too heavy for me to balance with him and a walker. I feel very lucky to have not progressed very quickly until after I started having children because I was able to experience a lot of " normal" youth stuff. I was honestly pretty wild and unruly as a teenager, as I'm sure many other FAers understand, because being told that you have a life shortening disease at the time of life that most people are trying to figure out what kind of adults they will be. It is pretty difficult having to deal with hormones gone wild and everything else being a teenager entails, but much harder asking someone dealing with these issues to confront their mortality. I separated from my husband in March 2010 and in September 2010 I am moved in with my parents with my two small children. I am now in the process of trying to move out and live independently.￼
I do a bunch of volunteer work, I love it so much￼ to feel helpful (which doesn't happen￼ too often, LOL).