Waltham Man To Run Boston Marathon To Honor His Daughter

WALTHAM, MA — Lyla Heffernan, a smiley, bubbly baby, would have been 8 this year.

But since Lyla's unexpected death at 3 months rocked the Heffernan family, her father, PJ, has been running Boston Marathon to bring attention to and help support research for Sudden Unexpected Infant Death Syndrome. Through the fundraising effort, he and his wife Michelle have helped families who have experienced the sudden loss of a young child in this particular way.

SIDS, or SUIDS, the sudden and unexplained death of a baby younger than 1 year old, is the leading cause of death in babies up to 6 months old. In 2017, there were about 1,400 deaths attributed to SIDS, according to the Centers for Disease Control and Prevention.

Shortly after Lyla — their first child — died, the family felt helpless. Although SIDS is, by definition, unexplained, little was known about it in 2012.

No one knew what to say to PJ, his wife Michelle or their extended family. And they didn't know much of what to say in return. The couple investigated support groups for people who had lost babies while in mothers were in the final stages of pregnancy, and to groups who had lost children to drugs or suicide, they saw councilors, but nothing really fit until they happened to get connected with two other families who had recently lost infants, around the same time as them. Suddenly they found someone to grieve with and to whom they could relate. One woman was planning to run to honor her child during the Boston Marathon.

This motivated PJ, who grew up watching the Marathon and knew well the inspiring stories of the thousands who run annually for causes. The idea of running to honor his first child, hit home — a tangible way to remember and celebrate a life. When he and his wife discussed it, it made sense for him to join those raising money for Boston Children's Hospital's Miles for Miracles team.

Because of fundraising rules, they had to raise $12,000 to dedicate their funds to a specific fund beyond the generic hospital pool of funding. The Heffernans knew they wanted to raises money specifically to the Robert's Program, a SIDS and SUDC research program that includes genetic testing, stem cell research, neuroimaging research and grief research in an effort to knockout SIDS and SUDC ( SUDC is the sudden unexpected, unexplained death of a child over the age of 1).

While PJ trained, Michelle would head the fundraising effort.

That first year, PJ ran and had a photo of Lyla and Sloane Elanjian and Aidan MacKay, the two babies of the two other couples they had recently met on his running bib. The next year the number grew as friends began to refer others to Michelle upon hearing of other instances of infants dying because of SIDS.

Michelle became a support to other mothers as they grieved or had questions and wondered about their future.

"It’s something that we didn’t have when we went through it," Michelle told Patch. "I just wanted to meet a mom who has lost a baby to SIDS, and had another baby. I didn't have that, I just wanted to be that for others."

This year will be the seventh year PJ will run the Boston Marathon for his daughter and for other infants lost. They missed the year the couple's twins were born. This year, the cherub faces on his running bib have grown to 13. In addition to honoring Lyla, Sloane and Aidan, he's running to remember Rhys Wiedman, Pablo Gomez, Melinda Wichern, Charlie McCourt, Landon Dawley, Easton Malone, Sloane Lafferty, Jack Walsh, Julian Cayer and Evalyn Rau.

Michelle said each year when she fundraises she puts the focus on celebration — she designs t-shirts, rents out restaurants, holds raffles — and is humbled by the support she's gotten from the community with the effort.

It's paying off for a program that doesn't get a lot of federal funding, she said.

The Robert's Program has grown tremendously throughout the years, she said, and she can't speak highly enough about the Dr. Rick Goldstein who runs it.

"Waltham is an amazing community in general, we’ve gotten so much support from them," she said. Already this year the family has raised about $8,850 of their $12,500 goal.

When the pandemic struck this year, it meant the big plans for dancers and bagpipes would have to be canceled, and the gatherings and raffles were reduced to T-shirt sales. It's the first year that the Boston Marathon will be held "remotely." But it didn't occur to the Heffernans to skip it.

"It's become a kind of therapy for the family," said Michelle's father, Tom MacInnis, who is the Waltham fire chief. MacInnis has had a picture of him and Lyla as his cell phone screen saver for the past 8 years, even as the photos of his other three grandchildren, the Heffernan's other children line his office bookshelves.

Although "therapy" might not be the right word, he said, it is an important part of the family and a tangible way to remember Lyla while helping others.

"It means a few things," said Michelle, "You never want anyone to forget your baby, you want them to remember, this is their legacy. This is our way of giving back to a program that has been so good to us, and if they can change anything and make things better in the future, what more could you ask for, to come out of something like this?"

If you see a man running through Waltham Saturday in a checkered orange and blue tank top on with the faces of 12 children, that's PJ. He plans to head out to Natick to start his run around 9:30 a.m. along a stretch of the actual Boston Marathon course that will take him to Heartbreak Hill. He'll pass by the Newton Fire Station around 10:30 a.m. then zig-zag through Newton, past the West Newton Cinema, into Waltham where he's likely to be at the top of Moody Street near Shoppers Cafe around 11 a.m. he'll head down Moody to Main and then Lexington streets and get to Pizzi Farms around 11:30 .m. before heading down Trapelo Road making his way to the Bentley Rotary and Lyman and Main Street, popping into Watertown and passing by Victory Field before making his way back to Waltham where he's hoping to finish around 2 p.m.

Some of their family is set to run the first 10 miles with him in Newton, and a handful of the parents of the other children are planning to run a few legs with him as well.

McInnis will be cheering PJ from the fire stations along the way: First at the Newton Fire Station then at the Moody Street Fire Station, then Central Station and Watertown's Fire Station, he said.

"If you see him running, the bib stands out pretty bright," Michelle said. "Give him a beep, give him a shout."

If you're interested in donating to Boston Children's Hospital go here.

Read more:

Waltham Runner Laces Up For A Very Different Boston Marathon This Year

Read more about the SIDS and SUIDS.

Got a tip? Patch reporter Jenna Fisher can be reached at Jenna.Fisher@patch.com or by calling 617-942-0474. Follow her on Twitter and Instagram (@ReporterJenna). Have a press release you'd like posted on the Patch? Here's how to post a press release, a column, event or opinion piece.