Toronto family of child with ultra-rare disease urges public to take Covid-19 seriously
In an east Toronto home, like so many others across the city and country, the Pirovolakis family is finding ways to pass the time and keep the children entertained.
The difference though, for this family of five, is that its situation during this coronavirus pandemic is far more precarious than most.
“We have to be extra careful with Michael because he has some underlying conditions and this could really be a life or death situation for him,” explained Georgia Kumaritakis.
The couple’s youngest child has an ultra-rare neuro-degenerative disease called Spastic Paraplegia Type 50 or SPG50, for short.
When Global News first met the family in summer 2019, the reality of having a child like Michael was just setting in.
“There was no hope, no hope,” said Kumaritakis through tears at the time.
But Michael’s parents have never given up — and they’ve been busy since then.
A GoFundMe page has raised closed to $1.5 million , of its $3 million goal to fund a cure for Michael through gene therapy.
Money raised is applied to research being done on SPG50 through a number of hospitals and universities.
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