Four years ago, Lakewood Ranch’s Grayson Tullio was using a Hoyer lift to get out of bed.
The sling didn’t fit him properly, so Tullio, who has Duchenne muscular dystrophy, partially fell out of it.
His mother, Jen Tullio, made three phone calls. One to call for an ambulance, another to his grandmother Pat Miller, and a third to Lakewood Ranch’s Monika Oberer.
Oberer sped to the Tullio home to help calm Jen Tullio who was emotional. She also instructed first responders how to best assist Grayson.
A few months ago, Grayson Tullio learned that Oberer risked receiving a speeding ticket to be there for him.
“She said she didn’t care because she wanted to be there for me,” Tullio said. “That helps me figure out that this is a person who will do anything for me, even if it means breaking the rules.”
What started out as an opportunity for Oberer to raise money for Tullio’s nonprofit, Another Day for Gray, at the Chicago Marathon has turned into a 10-year friendship built on trust, honesty and a passion for helping others through races such as the annual Boo Run.
Races like the Boo Run and Doggies for Duchenne have been a way for the two of them to work together to raise money for research to find a cure for Duchenne muscular dystrophy.
An 'unconditional friendship'
Oberer met Tullio 10 years ago at Summerfield Community Park when he was 10 years old.
She was preparing for the Chicago Marathon and was looking to support a charity through her run. She heard of Another Day for Gray, a nonprofit raising money for research on Duchenne muscular dystrophy, through the Lakewood Ranch Running Club, of which she’s a member.
Oberer connected with Jen Tullio and started to learn about the disease.
At Summerfield Community Park, Oberer participated in a photoshoot with Tullio. She didn’t know then that it was the start of an “unconditional friendship” that would be one of the most meaningful relationships in both of their lives.
After meeting Tullio, Oberer said she knew she had met a cool kid. She enjoyed getting to know him and his family. The more time she spent with them, the more she saw the everyday challenges that a family can face due to his condition.
“I realized the everyday life in Jen’s household is not a normal everyday life with twins (Grayson has a twin sister, Emma),” Oberer said. “I said to Jen, ‘I will commit to always be there for Grayson.’ Honestly, I don’t know why I’m attached to Grayson. I just am. I’m at a point where I’m not going to question it. It’s given me 10 amazing years with him and a lot of great experiences. I’m not going to question it because Grayson doesn’t question it.”
Since then, Oberer has been there for every birthday party and every important occasion. Oberer was the one who volunteered to go skydiving with Emma Tullio when she turned 18 and no one in the family wanted to go.
Over time, Oberer built an unbreakable trust with Tullio, which is demonstrated in the fact she is one of only a few people he has trusted to lift him in and out of his wheelchair when he could no longer walk.
Throughout their friendship, Tullio and Oberer never minded the age gap. Grayson is 20 years old while Oberer is 50.
“I’ve never really asked or thought about her age. It’s never been a thing on my mind because in my brain, it doesn’t matter,” Tullio said.
They also don’t let their differences impede their friendship. The two had different upbringings. Grayson was born and raised in the U.S. while Oberer is from Switzerland and immigrated to the U.S. in 2002.
Above all, Grayson appreciates that Oberer is honest with him. She will tell him how it is, rather than sugarcoat anything. He said this new perspective was weird at first for him, but he’s grown to appreciate it because not many people will treat him that way. He said his trust in Oberer has made him value her opinion and wisdom.
Oberer said she can be herself with Tullio.
“I could always say anything,” Oberer said. “We just clicked.”
Tullio said he can be more open and less reserved with Oberer in comparison to being with his parents, Jen and Nick Tullio.
“Everyone’s always worried if they’ll say something, they’ll either maybe offend their parents or make them look differently at them,” Tullio said. “My mom also is always someone who sugarcoats things. She is a totally different personality from Monika who helps me see life as it is.”
They talk to each other about topics Tullio won’t talk to anyone else about such as relationships and his health. Tullio and Oberer said his health can be a difficult topic of discussion for his family, so Oberer is Grayson’s outlet to have open discussions about it.
“Sometimes I feel better at the end of the day when I get something off my chest that has been bugging me,” he said.
Both said they have many fond memories from the last decade, whether it’s conversations about life at a dinner, spending a day at Universal Studios, or traveling to Berlin, Germany where Oberer ran in the Berlin Marathon.
They’ve learned from each other.
Oberer said she’s learned what it’s like to be living with a disability and the challenges that can come with it.
“It’s beautiful to be able to see the world through somebody’s eyes and feel it and appreciate it,” she said.
During the interview for this story, Oberer turned to Tullio and said, “I’m a better person because I’m friends with you.”
Tullio said he’s learned not to be quick to judge. When he sees someone park in a handicap spot but doesn’t see a physical disability, he’s not as quick to question why that person is allowed to park there. Oberer has helped him to understand that not all disabilities are physical.
They’ve also expanded each other’s horizons. Tullio, a movie buff, has introduced Oberer to various movies she never would have seen on her own such as “Avengers Infinity War.” Tullio has tried new foods, such as salmon and broccoli, at her insistence.
Tullio said her persistence encourages him to step out of his comfort zone and try new things.
But there are some things Oberer and Tullio refuse to do. Although he is an avid video game player, she dislikes them.
“I’m never going to (play video games) with you because I’m not going to force you to do something you don’t want to do,” he said to her.
Passion for helping others
One of Oberer’s favorite aspects of Tullio is his big heart. She said he’s always thinking of others before himself and treats people with kindness.
She admires his dedication and desire to help dogs, especially those at the Humane Society at Lakewood Ranch. Tullio volunteers there at least once per week.
His love for dogs inspired Tullio to work with her to start Doggies for Duchenne, a race that benefits Another Day for Gray and the Humane Society at Lakewood Ranch. The race was held for five years before the COVID-19 pandemic brought it to an end.
Now the Humane Society of Lakewood Ranch and Another Day for Gray benefit from the annual Boo Run.
The Boo Run has been supporting Another Day for Gray for the past 15 years.
Tullio said over the past five years, he’s felt the impact a charity event like the Boo Run can have on nonprofits. He is grateful to see how the money raised can help the cats and dogs he sees on a weekly basis at the Humane Society while also knowing the money is going toward research for a neuromuscular disease that directly impacts him.
Every year, Tullio and Oberer participate in the Boo Run together, often dressed in a themed costume.
The pair has dressed as two peas in a pod, characters from “The Wizard of Oz,” superheroes, pandas, and Scooby Doo characters.
This year’s Boo Run is in honor of Hooch, Grayson’s service dog that died six months ago. Hooch was at Summerfield Community Park with Tullio the day he met Monika.
Liz Ramos covers education and community for East County. Before moving to Florida, Liz was an education reporter for the Lynchburg News & Advance in Virginia for two years after graduating from the Missouri School of Journalism.