Hi everyone! My name is Dirk Desserault and I am currently 35 years old.
I have always tried to live my life seeing the glass as half full. Even being diagnosed with Friedreich's ataxia at age 14 I simply viewed it as a hurdle, not a death sentence. Growing up in a fairly rural area meant that any exposure to other ataxians was a very rare occurrence. So my well-intentioned mom took to the internet trying to find someone that I could relate to, and help me understand my new life. To our amazement she found someone not much older than I was who only lived 20 minutes away.
However after just one phone conversation with this kid, I informed my mom that I did not want to meet up with him. I decided this because it became so clear to me that he was definitely a half-empty type person. I do realize that everyone has their own struggles that they are dealing with, however having a total Debbie downer of a guide would not help me. Over the next few years I stumbled through life (pun intended) on my own. I set little goals for myself (such as making sure I walked unaided across the stage at my high school graduation) that when reached gave me an awesome sense of accomplishment.
My freshman year of college was full of new experiences and challenges. I was clear across the state from my very supportive family, living in an apartment on my own, and at 19 years of age trying to make it seem normal using a cane every day. Very frustrated at times, I continued trying to accomplish everything in my life with the impression I was the only FAer to ever do this. During my fourth year away from home there was to be an NAF meeting in SeaTac Washington. I was very hesitant to attend anything ataxia related, because of the one kid that I talked to on the phone who totally freaked me out about it. But as it was literally taking place in my backyard, I decided to give it a go. I don’t use the phrase life-enhancing lightly. That’s exactly what it was! I was surrounded by hundreds of people in all age groups and of many different abilities dealing with the same challenges I have faced for the past decade by myself.
I met many inspiring people such as Kyle Bryant, and many researchers, including Dr. David Lynch. Attending that conference totally changed my life. It was there that I decided any research that I could help with in order to cure FA was going to happen. Over the past 10 years I have traveled all over the country participating in as many trials as I can, meeting many more people in our community along the way. Now I don’t enter clinical trials expecting personal benefits, but to provide essential feedback for the researchers. Even if I don’t personally see any benefits from a trial, we are a lot closer to understanding what FA looks like than when I was diagnosed. And that is a reason to celebrate. Now there are a number of medications in the pipeline that have been showing many positive results. I had come to terms with the fact that all of these studies we’re not going to benefit me individually. But I was still more than willing to participate in order to eradicate this horrible disorder from the face of the planet, and prevent future generations from having to fight something so dreadful. With many challenges ahead I was diagnosed over 20 years ago, And now there is finally a reason to see the glass as half full again!