Mikey Johnson walked through the doors of Poppy Boy’s Kitchen last Friday night to the sound of people he’d never met cheering for him and chanting his name. He smiled, waved one hand in the air and looked around. There was a lot to take in—he’d been waiting for this moment for a long time.
“After two and a half years on Zoom, I’m finally here,” he said. “I’m finally here.”
The 29-year-old Main Street member lives in Treasure Island, Florida, with his mom, Debby, and dad, Bernie. He’s participated in several programs virtually—including Space of Belonging, Zumba and Bake with Sharon—but he hadn’t visited Main Street in person. After three busy days of appointments at the National Institutes of Health, where he’s involved in a research study, Mikey made it to Main Street just in time for the Friday Vibes Spring Olympics. When he arrived, everyone was enjoying burgers and hot dogs as staff set up the activities.
“We’ve missed you,” one member told Mikey as she reached out to hug him. “Come sit with us.” They didn’t know each other well, but it was like they’d been friends forever.
“This is Mikey’s dream come true,” his mom said.
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Debby Johnson learned about Main Street through a friend, Erin Rupolo, who lives in Rockville and connected her with founder Jillian Copeland. “I was trying to start a co-housing community,” Debby says, “more like individual homes all in the same proximity—multigenerational, intentional neighboring.”
At the time, Main Street was hosting events for members once or twice a month, raising money and building momentum for its flagship building. When COVID-19 hit and Main Street shifted to virtual programming, Debby jumped on the opportunity. (Main Street has members in eight states, and a former instructor who still joins programs from Australia.) “When that membership started, he was all about it,” Debby says. “He couldn’t wait for the next class. He was always doing something—painting, virtual art museums, baking, Bingo. He has serious health issues, so he was stuck at home—it was his life.”
A talented musician with what his mom describes as “perfect pitch,” Mikey was diagnosed with a rare genetic disease called Williams Syndrome when he was 11 months old. The condition is characterized by “unique physical features, delays in cognitive development and potential cardiovascular problems,” according to the Williams Syndrome Association. “They told me he’d never read, write, walk or talk. He won’t read, write, walk or talk. I said, ‘really?’ ” Debby recalls. “He speaks Spanish, English and loves Shakespeare. He was the lead in a Shakespeare play and he memorized hundreds of lines.”
Her son plays piano, keyboard and drums. “I love listening to music and playing music—it soothes me,” says Mikey, who recently went to a Taylor Swift concert in Tampa. He works out almost every morning, rides horses, goes bowling with friends and spends lots of time outdoors. He and his family live by the bay.
“If I’m ever stressed out, I go out and watch for dolphins,” he says.
Mikey travels to NIH every year to participate in a Williams Syndrome natural history study, designed to better understand how and why the disease affects people differently. “They do your brain, they do your head, they do your heart. They do everything,” he says.
He’d been telling Debby, “we really gotta get up there,” since he joined Main Street in 2020, but because of COVID restrictions at NIH this was the first year he could actually visit. At Friday Vibes, he walked around with new and old friends and played games like Knock Them Down (with ping-pong balls and plastic cups) and Cookie Face, where you have to get the Oreo from your forehead to your mouth without using your hands. “It was very, very, very fun,” Mikey says, “and I had the chance to meet some awesome people and get to play with them and laugh with them.”
For Debby, the experience was “almost surreal.” She has two big dreams, she says. One is to visit New Zealand. The other is for Mikey to live in an inclusive community, like Main Street.
