Dad's mission to save his baby son with rare genetic disorder

A Toronto family is desperately trying to raise $2.5 million to give their son the best chance at surviving past his teens.

Michael Pirovolakis was developing normally until his parents, Terry and Georgia, noticed something wasn't quite right.

The baby boy wasn't lifting or grabbing things on his own so they took him to the paediatrician.

Soon after, in April this year, Terry and Georgia were given the devastating diagnosis.

"They basically told us that he would be completely paralysed and in a vegetable state by his mid-teenage years and to go home and love him," Terry told People magazine.

Michael, now 19 months, was diagnosed with an extremely rare neurodegenerative condition: SPG50.

The little boy has two siblings – aged eight and five – who are both healthy.

They decided to do all they could to give Michael the best chance at survival and soon found a girl in Boston, Massachusetts, living with a similar condition. She was about to undergo gene therapy, which was likely to improve her symptoms.

After meeting with doctors at the University of Texas, Terry and Georgia were told it would cost $3million to cure their son – and 59 other children around the world with the same condition - via gene therapy.

They've been given hope after hearing the success of gene therapy on patients with Tay-Sachs disease, an inherited disorder that gradually destroys nerve cells in the brain and spinal cord.

So far, the Pirovolakis' have raised $525k of their $3m goal.

Michael will soon be able to walk but Terry and Georgia fear, one day, that ability will be stolen from him.

"Sometime between 5 and 10 years of age it takes away the children's ability to walk," Terry 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."

Terry says he's on a mission to save his boy.

"I'm not going to let him wither away."