Michelle
Dupuis
Born
January 16, 1984

Michelle Dupuis
Born January 16, 1984 – Died February 24, 1996, at 12 years old

Metachromatic Leukodystrophy

Our dear Michèle had no signs of anomalies and showed no symptoms of this serious disease at her birth. We couldn’t have known what lie in store for our beautiful little girl in the days to follow. When she was very young, she was a sweet, chubby, and energetic little baby, but at about 18 months old, we noticed that the disease began to take over.

Just like her sister Janie, she began to squint, her little hands closed up, and we noticed that she was uncoordinated. When she was around 21 months old, she had great difficulty walking, and shortly thereafter, couldn’t walk at all. Her nieces and nephew, as well as her aunt, tried to stimulate her a lot. They played with her, talked to her, and they tried to help her walk everyday. They had to assist her with even the tiniest movements. Even with all of her hard work, she lost complete independence and she could no longer function on her own. She could not even eat on her own.

In order to verify our fears, we underwent testing with the help of doctor Geoffroy who finally confirmed that Michèle had Metachromatic Leukodystrophy. While we had hoped that Michèle would be healthy, it turned out that she carried this defective gene as well. At that time, we had two daughters, who were only two years apart, with this terrible disease.

Just like her sister, Michèle’s symptoms were strangely similar and many of her vital functions were affected. Our days were limited to sitting them in wheelchairs, feeding them (by syringe or with purees), washing them, burping them each time they swallowed something, helping them exercise with the support of a specialized teacher and physiotherapist, etc. Every six months, an occupational therapist came to our home to assess her needs with regards to the disease’s progress.

This serious degenerative disease causes problems with motor development, breathing, swallowing, and speech. It also causes blurred vision. They also had to suffer through all the little colds and flus just like so-called healthy children

Activities were limited during this period; we weren’t able to drive too far with them by car, because they had secretions, which often caused them to choke.

Michèle left us very suddenly. One Saturday in February, when she was 12 years old, our little angel left us to go find her sister.

During those years, Janie and Michèle brought us small but all too fleeting moments of happiness. We can’t forget their pain and suffering and especially how quickly their condition worsened. Today, our only consolation is to know that they are no longer suffering and that they are always right behind the door…