Parents Are Racing to Find a Cure for This 19 Month Old: ‘I’m Not Going to Let My Son Wither Away’
For the first six months of Michael Pirovolakis’s life, he was a typical baby who was reaching all of his milestones.
But when his parents Terry and Georgia began to notice that he wasn’t lifting or grabbing things on his own, they took him to the pediatrician. It was there that they were told their baby boy had low muscle tone and that while it wasn’t serious, it could become an issue down the line.
“We started physiotherapy immediately and around three months later they noticed his head wasn’t growing,” says Terry, 39, from Toronto, Canada. “They’re like, ‘Okay, let’s take you to the largest hospital in Canada which is a kids’ hospital and find out why.’ “
Doctors first thought Michael might have Zika because Terry had traveled to South America and Puerto Rico for work, but numerous tests only led to dead ends.
“They found that he didn’t have anything major, but his brain wasn’t developing the way that it should,” says Terry. “We then did genetic sequencing.”
They couldn’t have prepared for the devastating results they received on April 2 this year.
“They basically told us that he would be completely paralyzed and in a vegetable state by his mid-teenage years and to go home and love him,” says Terry, who said he went home with Georgia and they curled up into balls and cried for hours.
Later that day, the doctors sent them an email with the name of the extremely rare neurodegenerative condition: SPG50
According to the National Organization of Rare Diseases, “a gene with a disease-causing (pathogenic) mutation must be inherited from each parent to result in manifestations of symptoms” and many patients may be misdiagnosed as having cerebral palsy.
Terry and Georgia, 41, — who along with Michael, now 19 months, have two other children aged 8 and 5 — immediately sprung into action and didn’t accept their youngest son’s fate. They found a child in Boston, Massachusetts, with a similar condition and discovered that gene therapy she will be receiving soon could help with her symptoms.
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Terry began to fly around the country meeting with doctors, and in June at the University of Texas, they were told it would cost $3 million to create the gene therapy and cure Michael, the only child known in Canada to have the disease, and the other 59 children around the world who are affected.
The Pirovolakis used $30,000 of their own money and began to fundraise. To date, they have been able to bring in $507,000, but need another $2.5 million to reach their goal. Along with their GoFundMe page, people can also donate on their website.
The family is hopeful the gene therapy will work because of the success they have seen with it helping those with Tay-Sachs disease, an inherited disorder that progressively destroys nerve cells in the brain and spinal cord.
While they race to get the funding, Terry and Georgia take advantage of every moment they have with Michael.
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Terry spends time with his children in the morning, goes to work, and from 10 p.m. to 3 a.m. he’s “researching stuff for Michael.”
“Rinse and repeat every day,” he says. “My wife’s life consists of taking care of the other two kids and doing therapy for Michael between taking him to appointments or physio or OT or speech therapy.”
“Basically every day Michael has a therapy of some sort that’s not covered by the government. So we pay basically $5,000 a month in therapy to help Michael.”
And while Michael is almost about to walk, they know “it will all be taken away” if they don’t find a cure.
“Sometime between 5 and 10 years of age it takes away the children’s ability to walk,” he says. “And then between 10 and 15 years of age it takes away their ability to use their arms, and then during that period of time their brain is also degrading.”
But for now — and with no plans to stop — he’s “a man on a mission to save my son. I’m not going to let him wither away.”