Diane Bell: Legacy of Emilio Nares, 5, lives on 23 years after his passing

Richard Nares took the shoes of his late son, Emilio, when he ran 1,700 miles from Seattle to San Diego in his son's name.
Richard Nares took along the shoes of his late son, Emilio, when he embarked on a 1,700-mile run from Seattle to San Diego in his son’s name.
(Sholom Ellenberg)

When Richard Nares made his 1,700-mile run from Seattle to San Diego in 2018, he packed an extra pair of sneakers.

They weren’t for him. They were the pint-sized shoes of his late son, Emilio, in whose memory he was running.

“Every day when I packed and unpacked, I saw those shoes,” Nares said. “It was very comforting to me to have this piece of him with me every day.”

Nares’ words and his 2.5-month journey were captured in documentary footage filmed by his relatives, Lynn and Sholom Ellenberg. Lynn is the cousin of Nares’ wife, Diane, with whom Nares co-founded the Emilio Nares Foundation in 2003.

“I had this vision that we could make a documentary,” Sholom said. “But I’d never made a documentary. I’d never made anything other than a wedding video.”

Despite the Ellenbergs’ lack of film training and experience, their grassroots “Running With Emilio” project won an award this month in a film festival in Venice, Italy.

Emilio died of acute lymphoblastic leukemia on Oct. 15, 2000, three years after the toddler was diagnosed.

His dad, an artist who was working in a picture framing business, started dedicating his lunch breaks to driving other parents with sick kids, whom he had met during his son’s treatment, to and from Rady Children’s Hospital for their oncology visits.

“It’s just not right for kids to have to take public transportation to get chemo and cancer treatment,” says Diane, noting that many families had just one car or none at all.

Before long, the couple began applying for grants and created the foundation to provide support services to low-income families with kids in treatment.

Eventually, they upgraded from an old Buick to roomier vans, enlisted volunteers and hired some staff to run the programs, expanding to give a helping hand to families throughout Southern California.

They started handing out free bags of post-treatment snacks to the tiny patients. And one of the women volunteers with a sick son designed a T-shirt with an opening by the shoulder that unsnaps to allow access to the patient’s chest for a catheter port. That allowed delivery of chemotherapy and medication without the child having to remove clothing.

“Emilio hated having to take his shirt off in front of people,” Diane recalls. That only added more stress.

As Nares made his long-distance run from Seattle Children’s Hospital south in 2018, he stopped at eight more children’s hospitals, delivered free catheter shirts and promoted awareness of the foundation’s programs.

Richard Nares carried a water bottle bearing a photo of his late son, Emilio, for inspiration on his run down the West Coast.
Richard Nares carried a water bottle bearing the photo of his late son, Emilio, for inspiration on his run along the West Coast.
(Sholom Ellenberg)

When his son was being treated in a hospital in Boston, where they hoped for a miracle, runners were outside training for the Boston Marathons, much to Emilio’s delight.

The seed was planted for what became Richard’s “Heart & Sole” runs to raise money to help kids with cancer. First, he ran from Los Angeles to San Diego in 2011, then from San Francisco to San Diego in 2015 and finally from Seattle to San Diego in 2018.

On the Seattle run, sometimes he jogged solo in the rain. Other times, friends or random people joined and ran segments with him.

By the time Nares neared his destination at Liberty Station, he was joined by a straggling group, young and old, evoking a vision of Forrest Gump on his cross-country run.

When the donation tally was completed, his journey had raised $240,000 for the Emilio Nares Foundation, bringing the total for all three of his runs to about $360,000.

Diane admits she wasn’t fully on board in the beginning. Her husband was due to turn 65 while on the road. “I couldn’t wrap my mind around what that would look like,” she confessed during the filming.

But Nares didn’t want to wallow in sadness and churn his loss into bitterness like so many others in grief counseling. Pounding the pavement helped him process the grief. When the terrain got tough, he reminded himself that, “if Emilio could keep powering through until he just couldn’t, I can run a little bit.”

This photo of Emilio Nares, who died at 5, was on his dad's water bottle during his 1,700-mile Emilio Nares Foundation run.
This photo of Emilio Nares, who died at age 5, was on his dad’s water bottle during his 1,700-mile run. It fell off once, and his father had to backtrack to find it.
(Sholom Ellenberg)

The filming began as a casual documentation to post on the foundation website. Lynn drove the van and filmed, and her husband flew out from their home near New York City to help.

“He just wanted to document this feat he thought was totally crazy,” Nares says. “It really was just the two of them on and off. ... We never thought we were going to go to Hollywood with this thing.”

The hours and hours of footage were reduced to 45 minutes and finally condensed to a 13-minute movie with the help of film editors recommended by a fellow Ellenberg met by chance who produced ESPN sports documentaries.

The stranger simply plopped down at his cafe table in the tiny town of Kent, Conn. and began talking. When Ellenberg later asked why he had sat there, the man confessed he simply had to meet the person whose motorcycle helmet bore a sticker that said: “It’s never too late to have a happy childhood.”

The Ellenbergs submitted “Running With Emilio” in several film festivals. In May, the film took best international short documentary in the DocuWorld Film Festival in London. It was shown during the awards dinner, and Richard and Diane received a rousing standing ovation.

It also picked up an award of merit at the IndieFEST Film Awards and was accepted in the Brooklyn International Short Awards, New York’s Big Apple Film Festival, and others.

On July 6, it won an award at The Way of the Art Film Festival in Venice, Italy, with a jury of professional cinematographers. Not bad, considering the Ellenbergs had used their own equipment, investing only about $1,000 in a used Panasonic Lumix GH4 camera body, a mike and a cheap tripod.

On Aug. 11, “Running With Emilio” will be premiere locally at The Lot in Liberty Station. Tickets for an 8 p.m. screening are available at: Facebook.com/EmilioNaresFoundation.

The couple hopes it will be accepted in the San Diego International Film Festival in October. Meanwhile, they plan eventually to add a link to it to the foundation website.

Both remain active in foundation programs, although Richard stepped down as its head in 2020.

Diane has written a memoir about Emilio, “His Place at the Table,” slated for publication in September, and Richard plans to continue developing projects. “I don’t see myself slowing down.”

As they mark 20 years of support for this cause, they’ve driven more than 1.5 million miles and served more than 5,000 families. Their legacy, they say, is creating a compassionate, caring team of staff and volunteers who are devoted to carrying on the foundation’s work indefinitely.