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There Was No Treatment for His Son's Rare Disease, so Dad Moves Mountains to Make One...
• https://www.goodnewsnetwork.org, By Andy CorbleyFrom Fox News Digital comes the incredible story of a Canadian family that stopped at nothing to find a cure for their newborn son's rare disease.
Putting their life savings on a wing and a prayer, the determination to see their boy grow up turned to compassion after they decided that the medicine they helped create should save more lives than just their son.
Terry and Georgia Pirovolakis live in Toronto, and it was back in 2017 that they welcomed their third son, Michael, into the world. He was declared a healthy baby boy, and the couple went home to introduce him to his older brother and sister.
But as the parents began counting the missed developmental milestones, they were worried something was seriously wrong—and they were right.
After what Terry described as an "18-month diagnostic odyssey," Michael Pirovolakis was diagnosed by a neurologist with spastic paraplegia 50 (SPG50). This neurological disorder affects fewer than 100 known people in the world.
The doctors told the parents to take Michael home and love him with all their strength because he'd probably be in a wheelchair at 10, a quadriplegic at 20, and dead shortly after that.
"Children with SPG50 may experience early developmental delays, muscle weakness, and spasticity, but they continue to strive and adapt," Dr. Eve Elizabeth Penney, an epidemiologist at the Texas Department of State Health Services, told Fox News Digital. "Managing SPG50 requires a comprehensive, multidisciplinary approach to address its various symptoms and challenges."
The doctors told the parents to take Michael home and love him with all their strength because he'd probably be in a wheelchair at 10, a quadriplegic at 20, and dead shortly after that.