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We curled up in a ball and cried for a couple of hours.”

SPG50

Michael became one of 61 people on the planet and the only child in Canada known to have spastic paraplegia 50, also called SPG50.

It’s a rare disease that will leave Michael “with a progressive cerebral palsy effect in his limbs while his mind will fail like a Parkinson’s patient,” according to Terry, all because of a missing protein in the AP4M1 gene, starving his son’s brain.

“He’s got this double whammy of stuff happening to him right now.”

Michael has suffered seizures and as he ages, his muscles will morph from missing tone to having too much, robbing him of his ability to move. His brain, too, will lose function.

Photo by Pirovolakis Family - supplied

Terry and Georgia didn’t waste anytime starting to scour the internet for any bit of information about the disease.

They tracked down a child in Boston living with a similar condition.

“For two weeks, that family took care of us,” Terry said. “We took that information and started running.”

He started flying around the world to speak with specialists and pharmaceutical companies, while attending conferences to learn how they could beat the race against time.

“I asked them all the same question: ‘If this was your kid, what would you do’?” he said.

If this was your kid, what would you do?

Many of them pointed to gene therapy and researchers from the University of Texas. After Terry begged them to look at Michael, the team of specialists agreed, saying they could create an experimental therapy to try to cure his son — but it would cost $3 million.