living with a rare neurodegenerative disease hasn’t limited mélody’s dreams and ambitions
‘a person isn’t defined by their disability alone — we are whole people, with dreams, desires, feelings and goals’
published jul 17, 2026
4 minute read
4 minute read
mélody courtois lives with friedreich ataxia (fa), a diagnosis that has shaped many parts of her life, but does not fully define who she is. john kenney
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biogen canada
this story was created by content works, postmedia’s commercial content division, on behalf of a client.
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from an early age, mélody courtois sensed she was different from other children. “i didn’t have the same intensity during physical activities,” she says. “my feet would drag, and i couldn’t do the moves in gymnastics that the other kids could.”
at six years old, courtois spent three weeks in hospital undergoing tests that would eventually lead to a diagnosis of friedreich ataxia (fa), a rare, inherited neurodegenerative disease.
now 41 and living in drummondville, que., courtois has spent decades adapting to a disease that gradually affects coordination, muscle strength and mobility. but if you ask her what defines her life today, her answer has little to do with her diagnosis.
as a trained sexologist, she serves as a peer researcher on a doctoral project in the department of sexology at the université du québec à montréal. she also works at a suicide prevention centre. additionally, she is an ambassador for the ataxia canada foundation.
“my intellectual independence is very important to me,” says courtois. “at home, i’m the one who manages the bills and plans our vacations, among many other things. outside of the home, i organize community events and still very much working — something i hope to do for another 10 years. what keeps all that going is my brain.”
courtois lives with her husband and their two dogs in drummondville, que. john kenney
fa is caused by mutations in the frataxin (fxn) gene, leading to progressive damage to the nervous system1. symptoms often begin in childhood or adolescence with poor coordination, muscle weakness and fatigue. eventually, fa may affect speech, mobility, the heart and other body systems2.
for courtois, the physical changes have been gradual but relentless. she received her first wheelchair near the end of high school. at first, she used it only for long outings. “i was terribly shy,” she says. “i didn’t like people looking at me in that state.”
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when courtois started college, however, the larger campus and longer distances made daily wheelchair use the practical choice. despite her initial reluctance, the chair became something else entirely. “it represents security,” she says. “it’s comforting to have it.”
like many people living with a progressive neurological condition, courtois says she is repeatedly redefining what independence means. for people living with fa, independence can mean different things.
for melody it’s a combination of mental strength and doing things her way. “i rely on my husband and my home care attendants to have a day-to-day life that resembles something normal.” accepting that support hasn’t always been easy. “sometimes i absolutely need to do things on my own,” courtois says. “i get stubborn.”
that determination has carried her through decades of change. as her fa evolved, she adapted with every stage.
as a teenager, courtois remembers telling a physiotherapist that the day she could no longer dress herself would be devastating. that day eventually came. “but i have always found a way,” she says. “i won’t regain what i have lost, but hanging on to what i have now means i can continue to live life on my terms.”
for françois-olivier théberge, general manager of ataxia canada, preserving that ability to adapt and continue participating in everyday life is one of the most important goals for people living with fa.
théberge understands the disease from two perspectives: he leads the national patient organization and is also the father of two sons with fa. “what people want to hang onto depends on where they are in their fa journey,” he says.
“sometimes it’s just about maintaining the things you have that sustain social participation,” théberge continues. “that could be art, volunteering or work. everybody has something to bring to their community and to society. maintaining independence looks different for every person living with fa, but preserving the ability to participate in the things that matter is an important part of preserving quality of life.”
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théberge hastens to point out that, despite common misconceptions, fa affects physical function, not intelligence. because some people develop slurred or slower speech, he says, others can wrongly assume they have significant cognitive impairments. “i know people with fa who are completing doctorates, writing books, working as accountants and artists.”
that breadth of ability and ambition is reflected in courtois’ own life. beyond her paid work, she speaks at conferences, appears on podcasts and manages pas de bâtons dans les roues, a social media platform that shares accessibility tips, travel advice and practical information for people living with disabilities.
courtois’ practical, peer-led information can be especially meaningful for people navigating disability in quebec and eastern canada, where fa is more prevalent. studies show that friedreich ataxia in certain french canadian and acadian regions is driven by “founder effects,” which occurs when small, isolated groups of early settlers pass down specific genetic traits more frequently across generations.
“i want to keep supporting people living with disabilities,” courtois says. “that will always be a part of my life.” john kenney
courtois would like people to see beyond the disease. “a person isn’t defined by their disability alone,” she says. “we are whole people, with dreams, desires, feelings and goals.”
her own goal is simple. she hopes to continue working well into her 50s. “i want to keep supporting people living with disabilities,” she says. “that will always be a part of my life. every year that i can continue contributing to my community and doing things that make me who i am matters to me.”
for théberge, that’s exactly what people living with fa deserve: “advances in research are bringing hope. for people living with fa, the possibility of slowing disease progression means they have more time to contribute and remain connected to their communities. all they ask for is the opportunity to keep going for as long as possible.”
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for more information about fa or to connect with others in the community, visit ataxia canada.
this story was created by healthing content works, healthing.ca’s commercial content division, on behalf of biogen canada.
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