Little Victories - a Column by Matthew Lafleur

I eagerly kept refreshing my inbox. My local doctor’s office had called about 20 minutes earlier, letting me know that it had received my genetic test results and would forward them to me via email. As I wrote in a previous column, I needed updated results to participate in…

I wrote this speech last week for a group of middle-schoolers. I like the topic and think it is relevant for people like me, decades past the age of junior high students. Now that the school year is coming to a close, students are about to make a big transition:…

When I was younger, I believed in destiny wholeheartedly — that my life unfolded with very little input from me. I was just a passenger on the journey of my life, so no matter what I did, I still barreled toward a future written long ago. My belief in destiny…

Somewhere, it’s like a whistle has been blown urging me to get off of the sidelines and into the game. Finding a treatment for my rare disorder is a lot like a professional football game. Crazy metaphor, I know. The progression of Friedreich’s ataxia (FA) ended my athletic career right…

This year is an interesting time for those with Friedreich’s ataxia (FA). There are plenty of reasons to be hopeful for a treatment for FA, more than ever before. Finally, the first treatment seems on the horizon for this damned degenerative disorder. However, it’s important that the FA community be…

Second of two parts. Read my previous column here.  I’ve been telling the same old story about my Friedreich’s ataxia (FA) diagnosis for more than 10 years. Maybe it’s time to rewrite it. Like I wrote in my previous column, the facts of my diagnosis will never change,…

First of two parts. I answered my phone on speaker and set it on my table. I was worried that the call had a bad connection, as I heard only static. I almost hung up when the displaced-Californian voice of my good friend Kyle Bryant gave our usual greeting:…

As the end of February approaches, Rare Disease Day, held annually on the last day of the month, is exciting for most of those who live with a rare disease. But every year, something about this day just doesn’t sit right with me. This year, instead of showcasing the…

Often I’d rather dream than face reality. I reflect on this most mornings, when the sun rises enough to turn the sky pinkish-blue and my eyes flutter open. Typically, I wake up on my left side and have to turn myself over to get out of bed. But turning over…

A few mornings ago, I groggily looked up and saw my reflection in the mirror. Because my vanity is wheelchair-accessible, I can see myself when I’m brushing my teeth and fixing my hair. I see the world through two black holes. My dark brown eyes are almost completely black, so…