National Post (Latest Edition)

FAMILY OF BOY WITH RARE DISEASE ASKING OTTAWA FOR HELP

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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 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 but is hoping to raise $3 million so their son can receive treatment for his condition.

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