Coronavirus: Toronto-area family of child with rare disease turns to Ottawa for help with funding

The Toronto-area family of a child with an ultra-rare disease is urging Prime Minister Justin Trudeau to contribute to fundraising efforts to help pay for a potential cure for their son.

“We decided that we’re going to see if we can meet Mr. Trudeau,” said Terry Pirovolakis.

His son, Michael, is the only child in Canada with Spastic Paraplegia Type 50, or SPG50, a neurodegenerative disease that will rob him of all his functions, confining him to a wheelchair by the age of 10.

Read more: Toronto family of child with ultra-rare disease fighting for a cure

Global News first met Michael at 18 months, shortly after the diagnosis, that devastated the family.

At the time in June 2019, mom Georgia Kumaritakis said, “Everything you have hoped for your child was just gone and you think about what may not be, the future that may not happen.”

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The family quickly turned to crowdfunding to raise money to pay for gene therapy, which scientists believe has the potential to halt the progression of SPG50 and even reverse some of the damage.

More than $1.5 million  of a $3-million goal was raised.

Then the COVID-19 pandemic set in and all fundraising was put on hold.

“I think if COVID didn’t happen we would raise $2 million this year for the funding. We had the gala. We had signs going to Everest and they had to cancel because Tibet closed down,” said Pirovolakis.

Like many other families, the Pirovolakis’ has been impacted by the pandemic in several ways.

Click to play video 'Family of boy with ultra-rare disease fighting for a cure' Family of boy with ultra-rare disease fighting for a cure

Family of boy with ultra-rare disease fighting for a cure

Beyond the inability to continue fundraising for his son, all of Michael’s therapies were halted.

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“You see that he’s more on his tippy toes rather than on his feet because the spasticity is kicking in and that’s related to being in quarantine for six months,” said Pirovolakis.

“COVID has been the hardest point of my entire life. I’m working, my wife isn’t working anymore, we’re worried about our bills, we’re worried about how we’re going to pay for the future,” he added.

Still, he is about to take on a major fundraising effort, the first in a long time because Michael’s condition is deteriorating, despite the pandemic.

“Every night I can’t sleep well … thinking how are we going to raise another $1.6 million?”

It will be physically demanding but Pirovolakis is not one to shy away from a challenge.

“I started training and I thought maybe I could go from here to Ottawa. After a couple of weeks, I felt like I could,” he said.

A 400-kilometer bike ride from Pickering, Ont., to the nation’s capitol with the goal of meeting the Prime Minister and urging him to contribute to the fundraising efforts.

“What’s going to happen is if we don’t raise the money at this point, we’re going to have a cure ready but we’re not going to be able to inject our kids and it’s a scary thought to say that you’re so close and just because of money, you can’t get your kid treated,” said Pirovolakis.

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Click to play video 'Volunteers install pool for Toronto boy with ultra-rare disease in need of therapy during COVID-19' Volunteers install pool for Toronto boy with ultra-rare disease in need of therapy during COVID-19

Volunteers install pool for Toronto boy with ultra-rare disease in need of therapy during COVID-19

His hope is to treat Michael and up to ten other children from outside Canada.

Every step of the way, the family is spending hundreds of thousands of dollars.

“By this time next year we should have a treatment for our kids but it means we have to spend all the money all upfront. So we actually have almost no money left over, but we have safety testing lined up. The cure being manufactured, all these amazing things,” he said.

The journey is a costly one both emotionally and financially.

But at the heart of it is Michael, a child whose future hangs in the balance.

The link to the family’s GoFundMe page can be found here, as well as a link for Terry’s ride.

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© 2020 Global News, a division of Corus Entertainment Inc.

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