In talking about his life with Duchenne muscular dystrophy, Greenbrook's Grayson Tullio said he tries to do the things any 16-year-old would do.
"You try to find a way to get around it," he said of his incurable disease. "There are ways to conquer each different disease. I play video games, watch movies, read a book, have conversations with my friends and volunteer (at the Humane Society of Lakewood Ranch)."
Unfortunately, many things remain out of his grasp.
Tullio, who is the inspiration for the nonprofit Another Day for Gray, which raises funds and awareness about Duchenne muscular dystrophy, does think about things he would like to do.
"Like maybe get on a rollercoaster," he said. "Or even walking up stairs or running. I think that's not attainable right now, but feasible in the future."
On Feb. 1, the fifth annual Doggies for Duchenne Run will be held in Lakewood Ranch to benefit Another Day for Gray and the Humane Society of Lakewood Ranch. The race was founded by Lakewood Ranch's Rebekah Boudrie and Monaka Oberer, who wanted to do something to benefit both nonprofits. The 2019 race raised just over $20,000.
Does $20,000 make a difference when millions of dollars are needed to do the research?
"I think any amount of money makes a difference," Tullio said. "If people come out, it shows they care about something bigger than themselves. If you don't come out, you must have something big going on."
His mother, Jennifer Tullio, said gains are being made to combat the effects of Duchenne. A decade ago, when her son was diagnosed, the life expectancy for those with Duchenne was the late teens. Now it is the late 20s and climbing.
"There is stuff in the pipeline," she said of drugs being developed to help those with Duchenne. "But it's going to take a heck of a lot of money and a lot of time."
While those with Duchenne muscular dystrophy eventually develop heart and lung problems, Jennifer Tullio said her son is strong in those areas. His legs have weakened and become more fragile as he stopped walking altogether a year ago and in the last few months have broken his left leg twice.
Even with a cast, Grayson Tullio said he will show up bright and early for the Doggies for Duchenne event. He laughed and said Oberer, who has been a family friend for years and a major part of his support system, will pressure him to be on time.
"When Monaka first tried to do this race, I was trying to figure out if it would work," Grayson Tullio said.
Less than 100 runners turned out the first year, but now the race has grown to more than 300.
"When I see Grayson smile on race day, that's the best thing for me," Oberer said. "I have personally learned so much from him ... like smile when you have a headache. It's not the end of the world. When I am struggling, I think how Grayson would handle it."
Jennifer Tullio said it was amazing both Oberer and Boudrie combine to run the event.
"It does make a difference," she said.
Grayson Tullio, who attends Pinnacle Academy in Lakewood Ranch, is glad the Humane Society benefits from the race as well.
"Animals are like people," he said. "They need a social connection, a bond. They are not called man's best friend for no reason. They have needs like everyone else."
He has a service dog named Hooch he calls a great dog but not a great service dog.
Even so, the golden retriever has been with him 9 years.
"Dogs don't care if you are cranky or said. They come up and say, 'I am going to give you a big hug.' They will take the brunt of your pain."
At 16, Grayson Tullio is starting to think about college. He would like to be a film critic and wants to pursue degrees in film study and cinematography.
His mother said he is the news anchor for a weekly show at Pinnacle Academy as well as doing a movie review.
Does she think he eventually will be a film critic?