Dropping the ball: Fundraiser for rare disease a no-show

Dropping the ball: Fundraiser for rare disease a no-show
Angelle Bourdon and her daughter Melanie at Lamoureux Park.

By Adam Brazeau 
CORNWALL, Ontario – A family fighting Morquio A syndrome is moving forward after no one attended their volleyball tournament fundraiser.

The event was scheduled for Saturday, August 23, at Mocktails Patio in Cornwall.

Angelle Bourdon organized the tournament to raise awareness about the rare disease and help people like her 11-year-old daughter Melanie access treatments.

“I believe there were many factors that contributed to a no-show,” said Bourdon.

A few of the culprits: misprinted contact information on the initial invitations, an early start time of 8 a.m., and back-to-school season being in full swing.

“What is right in all situations is myself advocating on behalf of my daughter,” she said.

When Melanie was first diagnosed at two years old there was no treatment.

The disease wreaks havoc on the body, which affects bone development and restricts growth.

“Now, there’s a treatment that’s becoming available that will benefit all Morquio A patients in different ways,” said Bourdon.

In January 2012, Melanie started participating in clinical trials of Vimizim.

Every week for over two years, they have taken 10-hour round trips out of town, where Melanie spends seven hours tied to an IV pole.

“Since that time she has grown, become stronger and her endurance level has improved greatly,” she said.

But the trial will be ending soon.

As Bourdon attempts to secure provincial funding, Melanie will continue to receive treatment for an undetermined number of months.

It will be commercialized by mid-September, but we don’t know if the Ontario government is going to fund the treatment,” she said. “The next coming months will decide where we are headed in the future.”

Despite the lack of community support for the event, Bourdon left feeling she made a new friend: Paul St-Onge, owner of Mocktails.

“Together, we plan on organizing this tournament again next year,” said Bourdon.

For more information, visit Morquio Family Tree on Facebook.

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