Coyotes, Roadrunners, and a Cure for My Rare Disease

Matt Lafleur avatar

by Matt Lafleur |

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Sometimes holding on to hope looks a lot like desperation.

I’ve been dealing with the unstoppable progression of my disorder, Friedreich’s ataxia (FA), for most of my life. Since there is no treatment or cure for FA yet, nothing stops it from ravaging me and sapping my abilities little by little. But I won’t give up searching and hoping. Maybe one day, I’ll find what I’m after.

I wonder if that’s naive and desperate.

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What does it look like to constantly chase a goal but never quite reach it? I think of Wile E. Coyote, never giving up the chase for the elusive Road Runner. Isn’t everyone familiar with the sketch of the anthropomorphic brown dog tirelessly trying to capture the speedy blue land bird? (Special thanks to Warner Bros. Entertainment for the ubiquitous and surprisingly poignant cartoon.)

None of the coyote’s schemes to capture his prize are too outlandish or extreme. Sometimes he paints the opening of a tunnel on the side of a cliff, which the roadrunner zips through as if the tunnel were real. Other times, he orders elaborate gadgets (often anvils and dynamite) to capture the roadrunner.

But none of his attempts work. The roadrunner always eludes capture. The unflappable coyote will keep trying, and the audience will continue to laugh at his doggish determination.

Even though the coyote is portrayed as the butt of the joke, a comedic Sisyphus with zany sound effects, I see something admirable in the way he doesn’t give up, how he never stops his fruitless attempts to catch the roadrunner. In this two-dimensional cartoon, created to elicit cheap laughs from the audience, I see myself.

*Matt deadpans at the camera and holds up a sign that reads “Gulp!”*

Ever since I was diagnosed with FA, I’ve been on a tireless chase for anything to stop or slow its progression. I’ve tried countless medicines, vitamins, procedures, and therapies. None have prevented me from devolving from an active kid to an adult who is heavily reliant on others for many activities.

Like the cartoon coyote, nothing I order, no clever scheme I devise, ends with reaching my goal.

However, neither my story nor the coyote’s is a tragedy. Every experiment, even if it ends in failure, brings us one step closer to knowing how to catch our prize.

The Friedreich’s Ataxia Research Alliance released a course this year engineered by Salem Oaks, a company that builds educational resources for patient organizations, to educate our community about gene therapy clinical trials.

“It’s been over 20 years, and nothing has worked yet, but this development feels promising. Maybe this time …”

Sometimes holding on to hope looks like a painting of a cave on the side of a cliff. Maybe one day I’ll run through it.

Until then, I’ll keep persevering. I have a roadrunner to catch, after all. And so do you.

***

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.

Comments

Melinda Younes avatar

Melinda Younes

I love the visual of your article, it really describes the fight with Freidreichs Ataxia. I am 58 years old, finally diagnosed at 55 and waiting for the movement specialist in January this New Year. This has been a rough road especially through childhood in the 60’s with a 1 doctor, doctor office that really did doctor as the doctor on “Little House on the Prairie” and I am still living in the small town I grew up in and went to school and Church in. Coming up with my own treatments with my dads help when I was young and on my on till this really came harder has been the painted tunnel picture. Thank you for writing this and I finally here, can read y’all’s journey with something that has a name now. I pray for you all and I am very vocal now for you all. You all are an inspiration and very strong friends (family) to me. I am headed for Wednesday night service and putting all Freidreichs Ataxia individuals at the altar at my church. God Bless you all 🙏♥️

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Kevin Carroll avatar

Kevin Carroll

i have been reading about this Omaveloxolone they are trying to get FDA approved for 2022, its not a cure, but the are claiming it makes it treatable, my brother has FA and im constantly reading up on things, but i still don't feel clued up enough to put any trust in these recent articles, do you know much about this drug and is it promising ?

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