‘A race against time’: Toronto family tries to raise $3M to treat son’s rare genetic disorder

It’s a desperate race against time and a race toward hope. Terry and Georgia Pirovolakis are trying to save their son’s life, trying to find a cure that doesn’t exist. They’re determined to raise at least $3 million to fund an experimental trial in the U.S.

Michael is 18 months old and his doctors say he is the only child in Canada diagnosed with SPG50, a rare genetic disorder that threatens the toddler’s ability to speak, walk or even breathe, all in a few short years.

Michael’s mother Georgia Pirovolakis said he was a healthy, happy baby but she and her husband started to notice he wasn’t meeting his milestones, wasn’t developing at the same rate his siblings had.

The energetic toddler can’t walk despite an obvious desire to move around. He smiles and laughs and babbles, but hasn’t said his first word. He’s healthy, until he gets a fever and has a seizure, which sometimes takes hours for hospital staff to address.