National Post (Latest Edition)
FAMILY OF BOY WITH RARE DISEASE ASKING OTTAWA FOR HELP
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.