Lakewood Ranch mom becomes master marathoner to raise Duchenne awareness

Jennifer Tullio never draws attention to the tattoo lining the inside of her left wrist.

The Lakewood Ranch resident has had the tattoo three years, but most people in her life don’t know it’s there. For Tullio, the tattoo, which reads “Hope,” carries both literal and figurative meaning.

The H is for “Hooch,” the name of her 15-year-old son Grayson Tullio’s service dog, a golden retriever. The O is replaced by a heart, which Tullio said symbolizes giving her heart to Grayson. The P is standard, but the E is made with a green ribbon, one that represents Duchenne muscular dystrophy, the disease afflicting Grayson.

According to the Muscular Dystrophy Association, Duchenne is a genetic disorder characterized by progressive muscle degeneration and weakness. It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. It is carried on the X chromosome and mainly affects boys, though in rare cases girls can also see effects. Grayson’s twin sister, Emma Tullio, is neither a carrier nor is affected by Duchenne. Life expectancy for people with Duchenne is the mid-20s, Jennifer said, but it can vary per person, with some living into their 30s.

Jennifer’s tattoo is just one of many things she’s done for her son. The biggest action she’s taken, though, is set to be completed Sept. 16, when she runs in the Berlin Marathon.

Although Jennifer has been running marathons to raise awareness about Duchenne since he ran the 2008 New York City Marathon,  now she is competing around the world.

“I had envisioned it being a one-and-done,” Jennifer said about running marathons. “Once I crossed the finish line (in New York), I knew I was in trouble.”

After years of targeting marathons one at a time, she scheduled her first series of marathons in 2015 after feeling a need to “step up her game.” She participated in the “Boston 2 Big Sur” series first. Those two marathons take place on back-to-back days. Jennifer loved every second, even the feeling of exhaustion when the races were finished.

“I find it therapeutic,” Jennifer said. “It’s the closest I can feel to him.”

Through the years, Jennifer has accumulated medals  — 22 of them — from some of the biggest marathons in the world, and given them all to Grayson. Jennifer said it’s the first thing he asks about when she returns from races, and a smile always illuminates his face when he gets one.

He took to looking up marathons online for her to run, and after the London race discovered “he” was two races away from completing the Abbott World Majors Six Star Challenge: running six of Earth’s biggest and well-renowned marathons. With New York City, Boston, Chicago and London done, all that remained were Tokyo and Berlin. Finishers of all six are awarded a special medal recognizing the accomplishment at the finish line of the final race.

The races can be completed any time, but Grayson wanted to complete the challenge by the end of 2018. Jennifer wasn’t about to say no.

In February, she traveled to Tokyo to knock out that race. Grayson couldn’t fly for that long, so Jennifer went solo while her husband, Nick Tullio, watched Grayson and Emma. Jennifer was gone for four days, she said, and it was stressful to be away from him for so long. Grayson takes seven medications a day. He sleeps with a BiPAP machine to help push air into his lungs. He stays in a wheelchair full time, but can travel up to five feet with someone’s assistance to do some things. Jennifer said even that distance, though, is getting more difficult as Grayson’s Duchenne progresses.

Jennifer said Grayson doesn’t talk about Duchenne or its effects much, other than letting her know when his back hurts and making sure he’s sitting properly in his chair. Two weeks ago, though, he wrote a school paper about his life. He wrote that he was happy to be himself, Jennifer said, which matches the kid she sees every day: one with a positive outlook on life despite his circumstances.

When Jennifer travels to Berlin, Grayson will be with her, as will his uncle, Devin Miller, and grandmother, Pat Miller. Ten members of the Lakewood Ranch Running Club, Jennifer’s local team, will also be running, and there will be a virtual Berlin race held locally by the rest of the club. T-shirts reading “Team Grayson” were created for the occasion. Jennifer said the star of the shirts can barely contain himself.

“He wants to be part of the final step,” Jennifer said of Grayson. “He loves to come along and be supportive. He’s excited.”

Ironically, Jennifer said Grayson doesn’t like wheelchair-friendly races, the ones where someone pushes him through the course and to the finish line. Instead, he just likes to watch.

Jennifer is hoping to raise $25,000 by the time she runs the Berlin race, the same amount she attempts to raise each series. She’s doing so through teamgrayson.net, where Team Grayson merchandise can also be purchased. The donations will go to Parent Project Muscular Dystrophy and Action Duchenne.

There’s much to be done with the money. There is currently no cure for Duchenne, but Jennifer’s tattoo reads “Hope” for a reason. She and her family will never give up the fight.

“Anyone who meets Grayson knows he’s a special kid,” Jennifer said. “You realize we have to put an end to Duchenne. We have to save my Grayson.”