Following in Nanu’s footsteps took me somewhere unexpected

Aug. 13 marked eight years since I first started working with Bionews as a columnist for Friedreich’s Ataxia News. Anniversaries have a way of making us look backward, and this one has me thinking about how different my career looks from the one I once imagined before Friedreich’s ataxia (FA).

My grandmother was Eula Savoie, but to me she was “Nanu,” a name I somehow made up. When my grandma was a child, she would ride the school bus past a piece of property near where she grew up and tell herself that one day she would own it. After high school, she and my grandfather eventually did.

Even after they bought the property, their life didn’t go exactly according to plan. Nanu and my grandfather originally operated a grocery store there and bought a 187-acre plot of land to raise hogs. When the price of hogs plummeted in the 1950s, raising hogs became more expensive than selling them; the hogs were butchered, and Nanu used the meat to make Cajun food products to sell in the store. What started as an unexpected turn grew into Savoie’s, a successful business that prepares sausage, roux (“roo”), boudin (“boo-dan”), and other Cajun foods for customers locally in Louisiana and, eventually, throughout the Gulf Coast.

I assumed I would eventually become CEO of that business. I thought following in Nanu’s footsteps meant ending up exactly where she did.

Recommended Reading

July 22, 2026 Columns by Matthew Lafleur

Thanking my teenage self for never giving up on me

Taking a different path

As FA changed my vision for the future, I found myself gravitating toward writing and psychology instead.

I earned my graduate degree in counseling in Baton Rouge and planned to stay and begin my career there. I went from interview to interview, applying to hospitals, day treatment programs, and anywhere else that seemed possible. Nothing became concrete.

Living with FA made the search more complicated. I’ve never been able to drive, and simply getting to potential workplaces could be difficult. Once I arrived for an interview, navigating an entire facility in my wheelchair presented another challenge. I couldn’t help wondering how much those realities affected the opportunities available to me.

Eventually, I moved to Lafayette with an old college roommate and tried again. I was especially excited about the possibility of working at my undergraduate college, but those interviews didn’t lead to a job, either.

So I moved home with my parents and kept looking. Even then, accessibility remained an issue. I remember considering one counseling opportunity downtown only to discover that the building didn’t even have a wheelchair-accessible bathroom.

After enough experiences like that, I began to lose hope. I wondered if my progressive disease had finally caught up with me. Maybe the world available to me was getting smaller. Then, eight years ago, I became a columnist for Bionews, the publisher of this website.

Matt Lafleur spends time with his grandmother, Eula Savoie, in 1990. (Courtesy of Matt Lafleur)

I loved it almost immediately. I wrote about my experiences with FA, but also joined a rare disease community filled with patients and caregivers from around the world. Their experiences didn’t necessarily mirror mine, but they rhymed with it. For the first time in a while, I felt like I had found a place I belonged.

About a year later, Bionews offered me a full-time position. I gladly accepted, while continuing to write the column that had brought me through the door.

My career since then has grown in ways I never could have imagined during those years of unsuccessful interviews. I’ve had opportunities to build relationships across rare disease communities, take on new responsibilities, and discover abilities in myself that I wasn’t sure I’d ever get the chance to use. Eight years later, I’m no longer wondering whether there’s a place for me in the working world. I’m excited about how much further I might still go.

Lately, I’ve realized that maybe my career didn’t take me as far away from Nanu’s example as I once thought. She had a plan, and circumstances forced her to change it. Instead of allowing that unexpected turn to become the end of her ambition, she built something meaningful from what was available to her.

My original plan didn’t work, either. I never became the counselor I expected to be, and I certainly didn’t become CEO of Nanu’s business.

For most of my life, I thought following in Nanu’s footsteps meant ending up where she did. Eight years into a career I never planned, I think I finally understand it differently.

Sometimes following in someone’s footsteps isn’t about reaching the same destination. It might be about what you build when life forces you to find another way there.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.