Mom Is Trying To Raise $3 Million For Her Son With A Rare Neurodegenerative Condition Called SPG50

by Karen Johnson
Originally Published: 
Courtesy of Karen Johnson

“As a mom I kept thinking ‘How will I know what he wants? He won’t be able to tell me when his throat hurts, or what his favorite ice cream flavor is, or what theme he wants his birthday party to be or what he wants to eat for dinner.’ All these trivial things that as a mom you never even second guess all of a sudden seemed unreachable.”

It’s every parent’s worst nightmare. It’s the thing that keeps us up at night. It’s the thing that makes big, fat tears roll down our faces as we wonder how we’d ever endure it. How we’d ever survive it.

Courtesy of Karen Johnson

Yet, it’s the reality for Terry and Georgia Pirovolaki. The 41-year old parents of three from Toronto are living through what the rest of us fear—their son is sick and may never get better. And it’s the thought of missing these small, everyday moments—hearing him say his favorite ice cream flavor or planning his birthday party—that Georgia says are the hardest.

“Michael is such a happy kid. He is always watching the world, taking it all in. We call him the neighborhood gossip because he is so curious and always looking at everything going on around him,” Georgia tells Scary Mommy.

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But in April of this year, at 15 months old, their active, smiling toddler with a mop of dark hair was given a grim diagnosis. After his parents noticed he wasn’t able to reach typical milestones for babies, like pulling up or grabbing things, they took him to the doctor. After a litany of tests, the Pirovolakis heard the worst news of their lives. They were told that Michael had a genetic condition known as SPG50 and would be paralyzed and in a vegetative state by his teen years.

“The words coming out of the doctors’ mouths were unbelievable,” Georgia says. “In a split second the life that we had envisioned for Michael had been taken away. Like any parent we had these hopes and dreams for all our children, and in an instant his life didn’t resemble anything close to what we wished for him.”

Courtesy of Karen Johnson

Georgia says she and Terry sobbed upon receiving Michael’s diagnosis and don’t remember the drive home. Yet as they pulled into their driveway, they had to put on a brave face for their other two children, who are only 8 and 5. Despite their best efforts, however, Georgia says that the older kids knew something was wrong. “Terry and I both could not stop crying. It was a hard day to go through, making dinner and putting them to bed, all while pretending that our lives hadn’t changed forever.”

But their lives had changed forever. However, Terry and Georgia decided that they wouldn’t give up on their son. There had to be something they could do—some treatment they could fight for.

Once they learned that Michael is currently the only known child in Canada with SPG50, the Pirovolakis expanded their search into the U.S. And it was at a University of Texas hospital that the terrified parents learned of gene therapy as a possible live-saving cure. But devastatingly, a clinical trial costs $3 million.

Courtesy of Karen Johnson

And while that number is astronomical to most families, when you’re told that between ages 5 and 10 your child will lose the ability to walk, and by his teen years he’ll lose mobility in his arms and his brain will begin to degrade, you find a way.

After hearing that gene therapy has helped patients with Tay-Sachs disease, a disorder that degenerates and destroys nerve cells in the brain and spinal cord, Terry and Georgia set up a GoFundMe page to try to raise that giant sum of $3 million, hoping that gene therapy could help Michael too. The mere possibility fueled his parents’ drive to keep going.

After cashing in all their savings and re-mortgaging their home, and after their community rallied and hosted fundraisers, the Pirovolakis are still $2.5 million short. And they only have a year to come up with the rest, as they hope to start gene therapy with Michael as soon as possible to stop any further degeneration.

Courtesy of Karen Johnson

For now, as they continue to raise awareness about their campaign to save Michael, the Pirovolaki family also lives day to day, the best they know how. Michael’s older siblings “have good days and bad days,” Georgia tells Scary Mommy. “They know that we are trying to cure Michael. They know we are trying to raise the money we need to help him, and they know that he needs a lot of help to do everyday tasks, but they are also his biggest supporters. They come to physio with us and cheer him on. They see us work with the OT at home and help him work on certain tasks. They are always on high alert, especially our daughter Zoe. She is always checking on him and asking us if he is okay. Zach, his brother, is always spreading the word about our campaign. He even brought CURESPG50 campaign cards to school on his second day to hand them out and let everyone know we need help to raise money to cure baby Michael.”

Not only do Terry and Georgia perform constant physical therapy with Michael to try to strengthen him, but also doctors perform test after test, desperate to find that one drug that could buy the toddler some time and slow down the ravaging effects of SPG50.

And as for little Michael’s part? Despite already struggling to move his arms and legs and suffering from epileptic seizures, his little 19-month is body is working hard too. “He is always moving always crawling, pulling up on anything he can pull up on,” Georgia says. “He wants to move he tries so hard but his body just won’t let him do the things he wants to do. However, that never stops him. He keeps trying and he keeps moving. He want to move, he wants to talk, he wants to play with all the kids he sees and hopefully one day he will be able to do anything he wants.”

But without the funding for gene therapy, a treatment that would transfer the gene Michael is missing into his brain, Michael won’t get that chance. And even then, there are no guarantees since Michael would be one of the first, if not the first, child to receive this type of treatment for SPG50. But it’s his only shot at a normal life.

Also, the Pirovolakis aren’t just campaigning for their own child. If this therapy works, it could help the 59 other children around the world fighting SPG50 and children who will be diagnosed in the future. On top of that, researchers believe that gene therapy like this can potentially help with other diseases, many of which affect adults, such as Parkinson’s.

Courtesy of Karen Johnson

This one fundraiser, albeit a huge one, could help so many people reach their full potential. It could help kids like Michael enjoy their childhood birthday parties and favorite ice cream flavors. And it could help adults live to see their kids grow up, attend their baseball games, watch them open Christmas presents, and dance with them at their weddings.

The Pirovolakis are stuck in the nightmare that every parent fears. They desperately want to save their son and are running in a race towards hope. But also against time.

To help Michael Pirovolaki have a chance to run with his siblings and enjoy his birthday cake for years to come, visit his GoFundMe page or website to make a contribution.

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