Tragedy Can Be Motivational

Hi, my name is Shandra Trantham and I am 20 years old. When I was 9, my favorite summer activity, gymnastics camp, turned into a scary experience. I was suddenly no longer able to stand on a balance beam. I really didn’t know what was going on, but I tried to pretend it was nothing. Over the years, my balance and walking became worse to a point that it concerned other people. When I was 12 years old, I finally was diagnosed with FA. For some, it was a relief to finally put a name to the mysterious ailment, while for others, it was the worst day of their lives. I fit in neither of those categories.

I vividly remember the blood draw that was my genetic testing, and I remember sitting in the waiting room alone while my parents were told my diagnosis. I sat there for what felt like hours, staring at blurry silhouettes through the frosted glass window. When they finally came out, I asked what the doctor said and they told me it was nothing. I knew they were lying and I pushed for the answer, but they refused to tell. A few weeks later, they told me I needed to start taking a bunch of supplements but they still wouldn’t tell me why. That same night I ran away on my bicycle and sat on the side of a street crying. I knew there was something wrong, I had known for years, but according to my parents it was ‘nothing’. It was then that I decided to take matters into my own hands.

When I was 13 I spent a lot of time researching my symptoms on the internet. One day, I came across what seemed like the answer: FA. The more I read, the surer I became it was FA. At a doctor’s appointment, I glanced over at the chart and saw the diagnosis. My suspicions were confirmed. Everything I read online about FA was scary, and I decided that I had to do something to change that. I didn’t want to die at 30 or graduate high school in a wheelchair, so I read. I absorbed scientific article after scientific article trying to figure out how to get better. Unfortunately, there were no answers.

When I was 16, my parents finally told me about my diagnosis. I already knew, and I was angry. Looking back now, I get it. They didn’t tell me because they didn’t want to ruin the joy I had as a kid. Little did they know, I knew what was up and I was already plotting how to stop it. I would become a scientist and research a cure myself.

Now 20 years old, I am about to graduate college with a degree in Cell and Molecular Biology. In a few months, I’ll be starting a PhD program in Neurogenetics. I am well on my way to helping research a cure, but I definitely have a long way to go before I get there. With my cane in hand, I am determined to stop this disease for not only myself, but for all of my amazing FAmily.