Outrunning the Odds

Born with a rare genetic disorder, Joey Gargaro became a marathon runner

Joey Gargaro
Photo: Michael Callaghan

Joey Gargaro was not an ordinary baby. He was, for one thing, bigger than most. He was also so frail the doctors told his mother not to put him in any physical activities. “I said, not in this family,” says Mary Gargaro.

Joey struggled to get words out. He was slower than the other kids in his hometown of Port Moody, B.C. He got lost easily. He was physically awkward. And so fragile, he broke his clavicle three times. But he was also determined. Now 23, Joey golfs, swims, bikes, does yoga, and he’s finished three marathons and is training for his fourth this spring.

“In 2008, I started cross-country running and ever since, I’ve been getting better every time,” Joey says. “I remember my first training session and I couldn’t even run a kilometre. Now I’m doing marathons.”

I remember my first training session and I couldn’t even run a kilometre. Now I’m doing marathons.

Joey was born with Sotos Syndrome, a rare genetic disorder known as cerebral gigantism. Sotos occurs in approximately one of every 14,000 births; those who have it experience unusually early growth, very large hands and feet, and protruding foreheads. Often they have mild intellectual disability, speech impairment and challenges such as frequent nosebleeds, curvature of the spine and oversized internal organs — not conditions that tend to make an athlete.

Still, Gargaro ran his first marathon on May 5, 2013. “I did it in four hours and 30,” he says. “I ended up walking a bit because I got these hip cramps, but I kept going.” A year later, he ran 3:44 at the BMO Vancouver Marathon. Joey was hampered by a cold and cough this year. “He persevered and finished the race in under four hours (3:52),” says Mary. “He never gave up.”

Joey runs at least three times a week, averaging about 10K most days. He is spurred on by his sporting family, avid golfers all, as well as supportive friends and coach John Taylor at Coquitlam’s Phoenix Running Club. Joey has even inspired his mom to start running, although his dad, Felix, has been sidelined with a dodgy knee.

“My goal is to somehow qualify for the New York City marathon so I can take him and the two of us can have a fantastic time together,” Mary Gargaro says.

Mostly what keeps Joey going is his sheer love of running.

“You’re just out there and you’re having a really good time. You’ve got nobody to say this about you. You’ve got nobody to say that about you. You get into that zone, like you’ve got blinders on, and before you know it, you’re at the finish line.”