'Luckiest guy in the world': Ottawa scientist races for son battling leukemia

When Emilio Alarcon's one-year-old son Alonso was diagnosed with leukemia, he quietly promised the little boy — also born with Down syndrome and a hole in his heart — that someday they'd go running together.

Today, Alarcon intends to fulfill that promise.

Alarcon plans to cross the finish line at the Ottawa Race Weekend half-marathon with the now six-year-old Alonso in his arms. 

After years of hospital visits, Alonso is now off treatment, although he's being closely followed by an oncologist to monitor his health. 

"It's like a catharsis to me when I'm running," said Alarcon, a researcher at the Ottawa Heart Institute. "I have a lot of memories flashing back from those days in the hospital," 

'A gift to me'

Race weekend brings tens of thousands of people to Ottawa from across the country and world. It's the largest multi-distance race in Canada. 

Alarcon is also raising funds for the Ottawa Heart Institute. He said he feels indebted to the health care system which helped save his son's life.

"The new memories of the times I spend with him and my wife [are] a gift to me," he told CBC Radio's All in A Day. 

"I'm doing my science [in the best way I can] to give back to society, to give back to the community — that's what I do. And I do it because of [Alonso]."

Alarcon has chronicled his son's battle with leukemia on Facebook, where he's written both heartbreaking and hopeful letters to Alonso — each accompanied by a photo of the boy with a wide, excited grin.

"Three years ago, we were starting the first round of chemo, my first thoughts were that I will not get a chance to see you walking," he wrote in a post on July 2016.

"Three years after that day, you are still here buddy, [surviving] a not-so-good prognosis."

A month later, in another post, he writes about how grateful he is for the time they've had together.

"The luckiest guy in the world was given a gift, but he did not realize what he had until one day, when he saw his son really sick and was told he might not live for [much] longer," he wrote. 

"But his son was not scared or unhappy ...  in those 18 months, his son taught him that true love does not count chromosomes and prognoses."

A scientist and a father

Originally from Chile, Alarcon decided to stay in Canada when his son got sick so he could be treated at the Children's Hospital of Eastern Ontario.

He was eventually recruited by the Ottawa Heart Institute, where he also mentors students in his field, teaching them how to help families in similar situations.

Alarcon said that being both a scientist and a parent of a child with serious health issues taught him a lot about health care.

"You start realizing we have the conception that modern medicine can cure everything. But there are a lot of pitfalls in there," he said.

Alarcon said he'd be wearing a necklace made of handcrafted beads, adorned with black letters spelling out the names of his wife and his son, during Sunday's race.

He also prepared for the race by mapping out a training route in Barrhaven in the shape of a heart — an ode, he said, to why he runs.