Dad runs Boston Marathon to honor unborn daughter with Down syndrome

"It felt like it was meant to be."

ByABC News
April 12, 2017, 1:20 PM

— -- A father's love for his unborn daughter has inspired a 26.2-mile run through the streets of Boston and has raised tens of thousands of dollars to benefit others with the same diagnosis.

Oliver and Kinnon Foley of Charlestown, Massachusetts, are less than a month away from the birth of their first child, a girl they named Tenley.

When Kinnon Foley was 11 weeks pregnant, they found out that their daughter would be born with Down syndrome.

"About six weeks after the diagnosis, the idea struck me — this would be my best opportunity to run a marathon," Oliver Foley told ABC News. "I learned the Massachusetts Down Syndrome Congress had one bib left. It felt like it was meant to be."

Down syndrome, also called trisomy 21, results when a person has three copies of the 21st chromosome. Typically people have two. The effects of the extra chromosome vary widely among people with Down syndrome, but it can cause developmental and physical challenges. Almost 1 in 800 babies in the U.S. is born with Down syndrome, according to research published in The American Journal of Medical Genetics.

The Foleys first connected with the organization soon after Tenley's diagnosis. They were referred by "every doctor and geneticist" to the MDSC first-call program, which connects parents new to a Down syndrome diagnosis, whether pre- or postnatal, with families that had similar experiences.

"You can ask any questions at all," Kinnon Foley said. "It's completely nonjudgy and an incredible resource."

Oliver Foley's original fundraising goal was $15,000, which he called "aggressive but achievable." With the marathon five days away, he has raised more than $62,000 through MDSC's Crowdrise page, surpassing his goal by more than 300 percent.

There's another person Oliver Foley will honor during his run: his wife's late uncle Chris McCall, who also had Down syndrome. He died in 2012 at the age of 65.

"I was very close to him," Kinnon Foley said. "He was the most wonderful, loving, kind person. He brought incredible joy to his siblings and profoundly affected my mom and dad's lives." She added that the couple's family members and friends are "incredibly excited" about meeting Tenley.

The Foleys said the world has changed dramatically for a person with Down syndrome since her uncle was born. "It was unusual that my grandparents would take him home and raise him. But they became huge advocates for people with D.S., and in many ways, Chris paved the way for Tenley."

Dr. Brian Skotko, a medical geneticist and an assistant professor at Harvard Medical School, runs the Down syndrome clinic at Massachusetts General Hospital. "People with Down syndrome are achieving previously unimagined successes, thanks in part to advances in medical care and innovation," he told ABC News.

"However, I think that most of the remaining barriers come not from medical limitations but from social ones. Until our schools, communities and workplaces become fully inclusive, our work is not complete," he added.

Oliver Foley is far from the only person running the prestigious race to honor someone with Down syndrome. Matthew Gousie will run for his 1-year-old daughter, Cecelia, also benefiting the MDSC. Emily Anderson will run for her infant daughter, Andie, benefiting Massachusetts General Hospital's Down syndrome program. All these runners have far exceeded their fundraising goals.

"By running the Boston Marathon, Oliver Foley and Emily Anderson are demonstrating, step by step, that the best is still yet to come for everyone with Down syndrome and those who love them," said Skotko.

"As parents, we want her to feel like she can achieve anything," Oliver Foley said when asked what his hopes are for his unborn daughter. "We know she'll change people's perceptions about what it means to have Down syndrome."

Kinnon Foley said, "What we want for her is nothing different than what any parent wants for any child. We want her to feel happy and loved by her community."

And the date Tenley is due to make her arrival? May 3, her great-uncle Chris' birthday.