Canada Toronto family of child with ultra-rare disease urges public to take Covid-19 seriously
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In an east Toronto home, like so many others across the, 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.
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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.
Apage 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.
Dad, Terry, explained on the campaign page, "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.
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"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 "high risk covid 19."
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."
This is my daughter Xiomara. She is the joy of my life. ???? She has serious medical conditions affecting her lungs, heart & kidneys. She's. Her life has value. Please think of her & her friends. Practice .
Coronavirus: Kawartha Lakes man with no travel or contact history dies of COVID-19
Both pneumonia and COVID-19 are listed as the cause of death. Health Unit reports COVID-19 related death of a CKL man: https://t.co/iTg1yjbi3b pic.twitter.com/COD4JISV3s— HKPRD Health Unit (@HKPRDHU) March 23, 2020The Halliburton, Kawartha, Pine Ridge District health unit says the man did not have any travel history or contact with anyone else who has tested positive for the disease.“Unfortunately, this man’s tragic passing highlights that we now have community transmission of COVID-19 in our area,” said Dr. Lynn Noseworthy, the health unit’s medical officer.
— Elena Hung (@ElenaHung202)
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 fiance.
"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 Doctor 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.
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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.
I’m 23 and I have lupus and am on blood thinners. I’d like to make it to 24 and marry my fiancé. Please think of us before you ignore.
— carly (@carlyroitz77)
Trudeau remaining in isolation longer despite wife recovering from COVID-19 .
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