A Mother's Love and Determination

BURTON, Ohio, June 9, 2009— -- 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.