In Saguenay, Saguenay – Lac-Saint-Jean, the parents of a young boy suffering from a rare disease want to buy an ultra-modern walker so he can get around.
Seven-year-old Samuel Desgagnés has Prader-Willi Syndrome, a rare genetic condition that affects 1 in 25,000 children.
In addition to his illness, Samuel had a brain hemorrhage at birth, which aggravated his intellectual disability. Most children living with the same syndrome can walk before age 6. Samuel, who was 7 years old and showed no significant improvement, his parents had little hope that he could walk.
Until recently, since a fledgling Quebec company, Ora Médical, contacted the family to try a brand new walker: the Levity. The unique structure of the walker was able to significantly improve Samuel’s muscle tone and gait.
Hope is reborn for the family, but the only problem is that the walker is not reimbursed by the RAMQ and costs $8,000. A crowdfunding campaign was launched.
Andréa Bilodeau also hopes that her testimony will make a difference and that other families can benefit in the future, but through the RAMQ.
The foundations have already raised their hand to pay the difference in the amount raised.