Marie-Josée Blais

When support brings renewed hope and confidence

Marie-Josée Blais often thought of herself as a “lost cause,” but is now savouring her autonomy.

Today, thanks to the care and guidance of experts, Marie-Josée Blais can accomplish her life projects, engage in social causes and explore her artistic talents. But for a long time, this 39-year-old woman thought that none of that would be possible. Now, she shares her inspiring story with us.

I was born with a mitochondrial disease that caused spondyloepiphyseal dysplasia, resulting in various bone, joint, neurological and sensory problems as well as growth hormone and cortisol deficiencies.

As a result, I’m of small stature, I’m hard of hearing and I have a visual impairment as well as several significant physical limitations.

An important step

At the end of the ‘90s, an orthopedist recommended that I go to the Institut de réadaptation Gingras-Lindsay de Montréal to get my first manual wheelchair. Over time, I started benefitting from the Institute’s technical aid services (including prostheses, ortheses, wheelchairs, etc.). In 2013, I received the most wonderful aid that made my daily life easier and more enjoyable—a motorized wheelchair! In fact, it has become my dearest ally, making it easier for me to get around, since I’m unable to manage long distances.

In 2003, I was admitted to the Institut Raymond-Dewar’s deafblindness program. Thanks to the collaboration between the Institut Raymond-Dewar and the Institut Nazareth et Louis-Braille, I was able to obtain the visual and hearing aids I needed for my university studies as well as for my daily activities. This had an incredible impact on my quality of life.

Since November 2014, I’ve been taking part in a program for neuromuscular diseases at the Centre de réadaptation Lucie-Bruneau. I’m surrounded by a multidisciplinary team that includes a nutritionist, a social worker, an occupational therapist, a clinical nurse, a psychiatrist, a psychologist, a special educator and a speech therapist.

In a rehabilitation centre, I never felt judged.”

I got to know two occupational therapists, a man at Lucie-Bruneau and a woman at the IRGLM, who really touched me with their ingenuity and open-mindedness. They weren’t afraid to work with my condition that required very specific adaptations. Working with my form of dwarfism is a monumental task!

No judgment, just support

From the time I was a teen, I was extremely wary of health and social service professionals. Their view of my disability seemed to be filled with prejudice and misunderstanding. But with time, I realized that in a rehabilitation centre, I never felt judged. And above all, I never felt like nothing could be done for me. It’s crucial to feel safe and to know that you’re an integral part of society.

“The three centres share four things in common: ingenuity, empathy, the ability to listen and the quest for new challenges.”

Marie-Josée Blais

Thanks to their teams, I’m more autonomous and better supported in my decisions. I’m also able to organize my time and manage my energy, pain, stress and anxiety.

Don’t ever lose hope, because these rare gems exist! One day or another, exceptional people come into our lives and mark us forever. I would like to thank them from the bottom of my heart for having believed in me and in my potential.

“Joining forces with them has been one of the most incredible moments in my life.”

Supporting these institutions and their teams of devoted experts means furthering research. It also means encouraging users and offering them hope.

Marie-Josée Blais
Living with a mitochondrial disease, causing spondyloepiphyseal dysplasia, since birth