BURTON, Ohio — The first signs that something was wrong with 11-year-old Connor Teare came when he was a toddler.
His muscles were growing increasingly rigid and becoming more difficult to move. He went from leg braces to a walker and, finally, a wheelchair by the time he was 5.
“I tried to walk like the other kids … I just couldn’t do it,” said Connor, who lives with his family in Burton, Ohio.
His mother, Cynthia Teare, brought him to a dozen different doctors but none could figure out what was wrong.
“I’m scared,” she said. “I’m frightened and trying not to let him see that I’m frightened. But inside, the biggest thing was we didn’t know what it — what diagnosis it was. Nobody knew what he had.
“Some of the doctors, they say there may never be an answer,” she told ABC News. “I couldn’t settle. I couldn’t settle for that.”
Teare spent months scouring the Internet for answers and, finally, came across an exceptionally rare disorder she thought might explain Connor’s condition. She wrote to a prominent pediatric neurologist, Dr. Irwin Jacobs at the Cleveland Clinic.
Jacobs said Teare’s letter left him stunned. “I mean, here’s somebody suggesting a disorder, and I’ve never seen this disorder,” he said.
It’s called Dopa Responsive Dystonia. It disrupts how the brain communicates with muscles in the body. Typically, patients with dystonia have an abnormal posture with a twisting of the extremities. Even though Connor did not have some of the classic symptoms, Jacobs agreed to give Connor the appropriate medication to see if it would help.
“When you have something that’s potentially treatable, you have to go for it,” Jacobs said.
Connor’s Miraculous Recovery
Within days, Connor’s condition started to improve. Slowly, his muscles began moving more easily. He could hold on and walk a few steps, and get in and out of chairs — things he hadn’t been able to do in years.
“I was sitting in the chair in the kitchen one day and … I feel like I can stand,” Connor said. “And, then, I start holding onto, I start holding onto the furniture and I start walking.”
Teare said, “By the second day … he stood at the kitchen sink and washed his hands, standing. That was monumental.”
When Connor stepped into the hallway at Burton Elementary School on his first day of third grade, his classmates and teachers erupted.
“They’re running up to him. They’re walking away. They’re telling anyone near that ‘Connor’s walking, Connor’s walking, can you believe it?'” said Cindy Ducca, Connor’s principal. “I immediately got goose bumps, smiled, and tears just streamed down my face. … It’s just unbelievable to see him walk.”
Today, Connor spends his free time on the basketball court shooting hoops, thanks to daily medication and one determined mother. She did for her son what a dozen doctors could not; she found a way to free her child from years in a wheelchair.
“I think she deserves all the credit,” Jacobs said. “Had she given up at any time … had she not been so insistent about trying to find a reason why her son had this difficulty, Connor would still be in a wheelchair.”