Running mates

Grayson Tullio and Connor Dzembo did not run in the races of the recent Walt Disney World Marathon Weekend; their similar, but different disorders make walking even short distances a challenge.

But after the races, the two boys and friends wore their parents’ medals like champions.

Jen Tullio and Nick Dzembo completed the 48.6 mile Dopey Challenge this month at the Orlando theme park. Their spouses, Nick Tullio and Samantha Dzembo, cheered them on from the sidelines, sporting the T-shirts of their respective causes.

From Jan. 9 to Jan. 12, Jen Tullio, an avid runner and Lakewood Ranch Running Club member, and Nick Dzembo, who jokes his preparation for the challenge was limited to slipping on his shoes, ran for the same reason.

“We’re not doing this for a personal accomplishment,” Nick Dzembo said before the races, which included a 5K, 10K, half-marathon and marathon, each held on separate days. “We’re running for our sons. The pain we feel when we run is not close to what our children go through every day.”

Nick Dzembo ran to support the A-T Children’s Project, which funds research for ataxia-telangiectasia, a rare and progressive neurological disorder from which the Dzembos’ son, Connor, 7, suffers.

Jen Tullio ran for Parent Project Muscular Dystrophy, an organization that raises funds for research and finding a cure for Duchenne muscular dystrophy.

The Tullios’ 10-year-old son, Grayson, has Duchenne muscular dystrophy, a genetic disorder that results in progressive muscle weakness.

Combined, the two families raised nearly $20,000 through donations before and during the event.
Connor’s symptoms are similar to Grayson’s, although the families would have never known without finding each other.

The Dzembos read a Jan. 12, 2011, story in the East County Observer that told Grayson’s story.
Slow to walk and crawl as a young child, doctors diagnosed Grayson with Duchenne at 2 years old.

Today, his progressive disease forces him to use a wheelchair on long walks and laborious outings.

After reading the story, Nick Dzembo emailed the Tullios for support. The families connected for dinner that weekend.

They soon brainstormed fundraising ideas with each other.

“We were floored with their ideas,” Jen Tullio said of the Dzembos, whose organization, the Wobbly Feet Foundation, has sponsored Lakewood Ranch Main Street events such as Music on Main, Irish Celtic 5K and Scottish Festival. “They know how to market their ideas. They had raised a lot more money than we had.”

The Tullios already had a method of their own.

Jen Tullio tackled the New York Marathon for Parent Project in 2008 and again in 2010. Nick Tullio ran the 2011 Walt Disney World Half Marathon.

By the next year, Nick Dzembo had run the Chicago Marathon with his wife.

“You look at me and you don’t see a distance runner,” said Nick Dzembo, a banker. “I’m an unconventional runner.”

When he’s not working and coaching Connor’s soccer team — which he does so he can monitor and control his son’s playing time and energy level — Dzembo runs every other day through his Mote Ranch community.

After the races this month, Connor sported his father’s medals, colorful straps decorated with his favorite Disney characters, which hung around his neck and past his waist.

He looked as if he had just ran the races himself; his stylish running shoes matched the medals.
But Connor’s disease kills his brain cells over time; his cerebellum will degenerate to the point where he loses motor function and speech ability. He struggles to find enough energy to get through the day.
Jen Tullio follows the more traditional marathon-training regimen.

Preparation begins 16 weeks prior to a race. She runs 40 to 50 miles per week during that time, often starting at 4 a.m.

“When I run, I think of Grayson,” Jen Tullio said. “I know how tired he is; how his legs burn. It gives me a glimpse of what he goes through.”

For the children, seeing their parents sweat and stride across a finish line is more complicated.
Grayson and Connor watch from tents off to the side, while their parents run through Disney’s theme parks.

They know their parents run for them, but they aren’t sure why.

When they are not running together, the Dzembos and Tullios are friends dealing with the same concerns.

“As much as Grayson can get it, he does,” Jen Tullio said. “He knows I am running for him. It’s a challenge to determine how to best communicate the children’s condition to them. It’s a balance (how much you want to explain it), but having a support system in Nick and Samantha (Dzembo) helps.”

THE RESULTS
Nick Dzembo
5K — 27:05
10K — 59:02
Half marathon — 2:16:54
Marathon — 4:44:17

Jen Tullio
5K — 28:19
10K — 53:35
Half marathon —- 1:57:22
Marathon — 3:52:26

Contact Josh Siegel at [email protected].