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Family of boy with rare disease asking Ottawa to fund research into condition

The father of a young Ontario boy with a rare genetic disease is asking the federal government to help fund research that could treat his child’s condition.

Terry Pirovolakis says his two-year-old son Michael was diagnosed last year with SPG50, an extremely rare disorder that causes a loss of mobility and a decline in brain functions over time.

He says his family has been raising money for research that could help Michael but the COVID-19 pandemic meant many planned fundraising events had to be cancelled.

Pirovolakis says he now plans to bike from Pickering, Ont., to Ottawa — starting on Saturday — and has asked to meet with the prime minister next week.

The family has raised roughly $1.5 million so far but is hoping to raise $3 million so their son can receive experimental treatment for his condition.

Pirovolakis says he wants the federal government to contribute to the family’s fundraising efforts.

This report by The Canadian Press was first published on Sept. 30, 2020.

This story was produced with the financial assistance of the Facebook and Canadian Press News Fellowship.

The Canadian Press


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