Janie
Dupuis
Born
December 28, 1981

Janie Dupuis
Born December 28, 1981 – Died April 17, 1994, at 12 years old

Metachromatic Leukodystrophy

When Janie was young, you never could have imagined that she had a disease. She was strong, soft, affectionate, loved playing, laughing, and having fun with others. We never saw her run but she began walking and talking at a very young age.

When she was about 17 months old, Janie began squinting, which lead us to go see a paediatrician and then an ophthalmologist, to confirm that it wasn’t due to poor vision and that it was likely from a lack of oxygen at birth. A few months later, we noticed that she lacked balance and coordination when she moved. She experienced difficulty walking, sitting, and standing. They suggested physiotherapy, which she did for five months.

At the very beginning of her second year, her condition worsened and we noticed a loss of autonomy every day, so we consulted more specialists. After several rounds of tests with neurologists and geneticists at the Sainte Justine Hospital, on February 19, 1984 doctors Guy Geoffroy and Serge Mélançon confirmed that Janie had Metachromatic Leukodystrophy. They told us that it was serious and hereditary…what a result! We were devastated and at the same time, we wanted to learn more about it. We were then told about the degenerative effects of this disease and the likelihood of her early death.

During her hospitalization, she lost the ability to speak (at two years old) and other problems soon followed. The years went by and the disease took control of our little girl. She lost all autonomy and her condition required constant care. She had great difficulty swallowing, which caused secretions.

She left us on a beautiful Sunday in April at the age of 12 with one of her most beautiful smiles.