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 new 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 neurodegenerative disease called spastic paraplegia Type 50 (SPG50).

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 close 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.

3:23 Toronto family of child with ultra-rare disease raising money for cure

“It pains me to know that instead of watching my son grow, learn and blossom into an independent young man, I will have to watch him regress, become wheelchair-bound and slowly lose all functionality of his body and mind,” Michael’s dad, Terry, explained on the campaign page.

“We need your help to change his future.”

Tweet This Click to share quote on Twitter: "We need your help to change his future."

But with Toronto, and the world, now dealing with an outbreak of COVID-19, the threat to an already fragile little boy is even greater.

This is not lost on the Pirovolakis family.

“Even though maybe you’re healthy and your family is healthy, there’s other people who this would affect in a totally different way, and it really would possibly lead to death,” said Kumaritakis.

The novel coronavirus disease adds peril to those who are already considered high risk.

Many have taken to Twitter to share their message using the hashtag #HighRiskCovid19 — people like Elena Hung, who tweeted that her daughter has serious medical conditions “affecting her lungs, heart & kidneys.” Hung is urging people to “stay home.”

Another tweet by Carly, who has lupus, notes she is 23 years old and wants to make it to her 24th birthday so she can marry her fiancé.

“Think of us when you ignore social distancing,” she tweeted.

On Tuesday, Eileen de Villa, the medical officer of health for the City of Toronto, said in a news conference: “What you must do, what I’m asking you to do, is stay home.”

Experts have been pleading with the public for days to stay home to help control the spread of the virus.

Playgrounds and basketball courts are shut down, a reminder that physical distancing is crucial.

Toronto physician Dr. Adam Kassam explained that, generally, COVID-19 presents no more risk to children, but for people with chronic illness, the risk is high.

“COVID-19 is especially challenging and dangerous for people with chronic lung disease, chronic heart disease, other chronic things like cancer…so what we know in the health-care community is that COVID-19 can be especially challenging for these types of patients,” said Dr. Kassam.

For the Pirovolakis family, an increased risk for their son means keeping him safe at home and reminding others to do the same.

“When they say, ‘don’t go out and hang out with your friends’ or ‘stay six feet away from other people,’ you know, we really have to follow these guidelines,” said Kumaritakis.

“Stay at home. Don’t do it for yourself, do it for others,” added Pirovolakis.

For their little boy, it could be a matter of life or death.