Marie-Claude Lemieux Fund
Funding provided: $47,330
A fund dedicated to people living with locked-in syndrome
Following its dissolution, the Benoît Duchesne Organization made the generous decision to transfer its remaining funds, $47,330, to the REA Foundation.
The Benoît Duchesne Organization’s mission was to support people affected by locked-in syndrome, a mission that the REA Foundation is committed to carrying forward.
In that spirit, the Marie-Claude Lemieux Fund was established in memory of Marie-Claude Lemieux, who passed away on January 23, 2025, to continue supporting individuals living with locked-in syndrome and their caregivers.
What is locked-in syndrome?
Locked-in syndrome is a rare neurological condition in which part of the brainstem is damaged, causing a disconnection between the brain and the body. Cognitive functions remain intact, but the person experiences near-complete paralysis. The after-effects vary from person to person: some regain certain abilities, while others live with significant long-term limitations. The main causes are stroke or traumatic brain injury to the brainstem.
Who was Marie-Claude Lemieux?
Marie-Claude was 29 years old when her life changed following a stroke. When she was a psychoeducator working at a centre for at-risk youth, she developed locked-in syndrome as a result of the stroke. Her cognitive functions remained intact, but she lost the ability to speak and could barely move. She could hear perfectly and feel touch on her skin, but could not respond to it.
With remarkable resilience, Marie-Claude gradually recovered certain abilities. She passed away on January 23, 2025.
At a meeting held at Institut de réadaptation Gingras-Lindsay-de-Montréal, her parents, Ms. Duchesne and Mr. Lemieux, described Marie-Claude as a woman and mother full of joy, a warm and loving person who drew people to her.
What is the Marie-Claude Lemieux Fund?
Having received care at Institut Gingras-Lindsay-de-Montréal, Marie-Claude was deeply grateful for the quality of support she received there. In her memory, and in keeping with the mission of the Benoît Duchesne Organization, the REA Foundation established the Marie-Claude Lemieux Fund.
All donations collected will be used to benefit patients with lockdown syndrome, whether to fund specialized equipment or services aimed at providing respite to caregivers.
Ms. Duchesne and Mr. Lemieux wished to recognize the exceptional work of the care team who supported Marie-Claude at Institut Gingras-Lindsay-de-Montréal:
- Dr. Nicole Beaudoin, physiatrist
- Marie-Josée Sauvageau, nurse
- Réjean Ouellet, nurse
- Sophie Boisvert, nurse
- Denis Boulet, nurse
- Natalie Martel, occupational therapist
- Danielle Forté, speech-language pathologist
- Guy Robert, wheelchair occupational therapists
- Camille Parent, wheelchair occupational therapists
- and all those who supported Marie-Claude throughout her journey.
Together, let’s honour Marie-Claude’s memory and make a difference for those living with this syndrome.
