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Ottawa community helping fundraise for boy with rare disease

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Ottawa came together in Stittsville on Saturday, raising more than $15,000 to help fund a cure for a seven-year-old boy diagnosed with a rare disease.

Just before Christmas last year, Anna Laidlaw's son Jack was diagnosed with hereditary spastic paraplegia type four (SPG4), a disease that affects less than 0.01 per cent of the population.

"It’s a disease where the neurons in his brain are degenerating and he’s slowly becoming paralyzed overtime," Laidlaw said.

While there is no cure or treatment, a team of researchers in the United States are working on one using gene therapy.

This weekend, friends, family and neighbours came together for a loonie circle fundraiser, helping to reach the $3 million total needed for the research to move into clinical trials.

Stittsville community members hosted a loonie circle fundraiser to help raise funds for a rare disease on Saturday, June 15, 2024 (Katelyn Wilson/ CTV News).

"Everyone’s out today making relationships and connecting with one and other and that’s the silver lining when you’re facing an up hill battle, to see the community support, it’s amazing," said Jennifer Brennan, who helped organize the event.

One-by-one, loonies were placed along the sidewalk, with the goal of forming a full circle around the block.

Others, such as neighbour Lloyd Palmer, also helped to raise money through a garage sale. Neighbours and friends also baked goods, made bracelets and even donated profits from their small businesses.

Children buying goods that will help fundraise for an Ottawa boy with a rare disease on June 15, 2024. (Katelyn Wilson/CTV News Ottawa)

"It’s touched us so much," said Laidlaw. "It means a lot to us, we are very grateful."

There was even a special visit from Ottawa firefighters, who donated $3,000.

"It was kind of like the best day ever," Jack said.

Another fundraiser is planned for June 22 from 11 a.m. to 3 p.m. and will be carnival-themed. A golf and dinner fundraiser will be held on July 12 at the Canadian Golf and Country Club. The family says silent auction items are still needed.

Donors can also give to the Blu Genes Foundation or a GoFundMe page in Jack's name. 

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