By Adam Brazeau
CORNWALL, Ontario – A powerful act of generosity has given 10-year-old Melanie Bourdon the ability to reach new heights.
The Cornwall girl was diagnosed with Morquio A Syndrome (MPS IVA) at the tender age of two years old.
The rare disease (part of the MPS umbrella of lysosomal storage disorders) is caused by an enzyme deficiency and it affects major organ systems in the body and causes bone and joint disease, heart and airway disease, and shortened stature.
To conserve her energy and help with mobility, Bourdon, who stands at 38 inches, uses a wheelchair. But the bright-eyed girl, a grade five student at Ecole élémentaire catholique Saint-Lucie, walks, talks, and text messages like any other pre-teen.
Being able to enjoy a meal with her family or grab a glass out of the cupboard was an insurmountable task before the SD&G Cornwall Shrine Club pitched in to buy her a new seven-inch hydraulic chair lift.
“It helps me a lot,” said Bourdon, the youngest of four siblings. “It’s a lot easier getting something to eat now.”
She thanked the local Shrine Club for helping her gain momentum in a long uphill battle against a devastating disease.
Her mom and dad, Angelle and Jean, reiterated the same sentiments and said that the generous donation will allow her daughter to participate freely in every day interactions and transactions that most take for granted.
Before receiving the lift, Bourdon was constantly blinded by her short stature and unable to properly participate in conversations at the restaurant or dinner table.
Even going shopping was a huge dilemma. But now she can raise her seat to be able to access debit payment at the cash register.
“It’s very important to have people like the Shriners in the community to help with medical expenses not considered by the province ADP,” said Angelle.
Rob Cave, SD&G Cornwall Shrine Club’s director of social media and public relations, was overwhelmed seeing Bourdon use the wheelchair in person.
“Being able to help this lovely family is the cornerstone of what Shriners do – providing exceptional care to exceptional children,” he said. “Having such a wonderful child that has a need here in Cornwall allows us to direct our local fundraising to support local children.”
Angelle works two part-time jobs, mostly evenings, to be able to accommodate her daughter’s medical appointments during the day, which allows her 10 evenings a month with her family.
She travels weekly to Toronto where her daughter participates in a clinical trial for an experimental drug, Vimizim; an enzyme replacement treatment for Morquio A syndrome. The drug was recently approved in the United States.
“I don’t believe a child should go without and the Shrine Club makes sure that doesn’t happen,” said Angelle. “They need to know people need their help, so they know what they are doing is worthwhile.”
Cave encourages anyone seeking information about their services to contact the Shrine Club through their website.
The Shriners Hospitals for Children has 22 not-for-profit hospitals across North America. Regardless of the funds available to the child, kids with burns, spinal cord injuries, orthopedic conditions, and cleft lip and palate are eligible for care.
For more information, visit www.shrinershospitalsforchildren.
For more information about Morquio A Syndrome (MPS IVA), visit www.morquiosity.com.
