JAY — Nine-year-old Bryan Riley tells anyone who has muscular dystrophy to “go with the flow.”

“I tell them ‘It’s OK. It’s a battle that we can win. Just go right
ahead do what you want,'” said the fourth-grader at Jay Elementary
School who was diagnosed with the disease when he was almost 2.

He
and his family are raising money for a cure and plan a yard sale from 9
a.m. to 2 p.m. Saturday, Sept. 12, at their home at 437 Main St. in
Jay. They make up the Green Meenies Team. Green is for his Irish
heritage and ‘Meenie’ is the nickname he gave his
maternal grandmother, Linda Leotsakos, of Chelsea. 

His parents, Tina and Shawn Riley, knew something wasn’t quite right
when their son was a toddler and was missing developmental milestones
such as talking, his mother said.

“He was very able to understand what we were saying but he couldn’t talk,” she said. But when he was 21 months old, his mother realized that he knew the alphabet because he pointed to
letters on her T-shirt.

His parents took him to a neurologist and eventually learned Bryan was lacking dystrophin, a protein involved in maintaining
the integrity of muscle.

“It means that my muscles don’t work as good as they normally
would,” Bryan said as he lounged in a chair at his
home. “My muscles get tired. Things like walking upstairs, I get tired
easily.”

So for school and going long distances, he uses his powered wheelchair, which is highlighted in green.

“The thing is Bryan needs his knees to be stable,” his mother said. “He knows how to keep himself safe.” 

At school, where he earned straight As in third grade, he has a
laptop equipped with MacSpeech Dictate, a voice recognition program that writes his words as he talks. When he rolls down the hallway he enjoys it
when other kids give him high fives, he said.

At home, Bryan loves to surf the Internet, play with his 4½-year-old
golden retriever, Chooch, and play video games. Taking a seat in front of the television in the living room, he demonstrated his prowess with the video game control. His watchful eyes and the
quickness of his fingers were the only signs that he was playing a
fast-moving game.

“I think I want to be a video-game programmer,” he said. “I like the exercise for your
fingers.”

His other interests are making movies at home with his older
brother, Shane, a fifth grader, and reading, writing and growing plants in the garden.

“I like the food,” Bryan said of his green thumb efforts.

“He’s got his act together,” Tina Riley said. “To him, it’s just
the way life has always been. He doesn’t see the loss. Bryan is
extraordinary. He is one of the most kind-hearted people I know. He’s
very empathetic. Last year, he got an award for being a gentleman.”

The youngster known for kindness was honored by the Muscular Dystrophy Association as its area Goodwill Ambassador.

[email protected]

Bryan Riley of Jay and his family, “The Green Meenies,” are joining the Muscular Dystrophy Association’s Monster Stride and Ride event this fall. They will raise funds until the Oct. 25 event.

What: Yard sale

When: 9 a.m. to 2 p.m., Saturday, Sept. 12

Where: 437 Main St., Jay

Why: Raise funds for a cure, help others with muscular dystrophy

Donations: Cash, items to sell and checks are being accepted. Checks should be made out to MDA of Maine.
More information: Tina Riley’s e-mail is [email protected] and her home phone number is 897-2288.

Bryan Riley, 9, of Jay, who has muscular dystrophy, is all eyes and thumbs as he demonstrates his skill on a video game at his home. 

Nine-year-old Bryan Riley of Jay tells those who have muscular dystrophy to “go with the flow.”