Correct Diagnosis Helps Two Children Walk Again

Oct. 11 -- As soon as he tried to walk, Ellen and Mark Colegrove knew there was something wrong with their son Harrison.

"He didn't have a normal gait," Ellen Colegrove said. At age 4, her son was limping along.

His older sister, Taylor, was fine — but Harrison already had a little sister, Gracie, just two years younger. She, too, seemed perfectly normal at first — until she began to try to walk.

Doctor after doctor saw the Colegroves, but none had a name for the disease that day by day was robbing their children of their mobility, confining them to wheelchairs and taking away their bodies, while their minds struggled with the loss.

"To discover that two out of our three children has a real problem here — it was devastating — it really was," Mark Colegrove said.

After five years of searching, the family would discover the sort of medical miracle you only find in movies. But first there would be many heart-wrenching days.

Childhoods Slipping Away

On one home video, Gracie is lying in bed, and her dad is trying to coax her to move her hands.

"Can you put your hands over your had," he asked.

"I can't," Gracie said.

The tiny details of their childhoods slipped away. The wrapping on the children's Christmas presents became too hard to maneuver. Playing with their toys was difficult as well. During therapeutic riding classes, it took three people to keep the children up on the horse.

"It just got harder and harder until I couldn't crawl, I couldn't move, I had to scoot around," Harrison said, grimacing. "And then you know I'd get rashes from the carpet. It was real painful."

A Tiny Tremor Was Clue

It was five years of test after test, until the family visited New Hampshire's Dartmouth Hitchcock Medical Center, and met Dr. James Filiano and his team.

"When I examined the children, there were two features that stuck out," Filiano recalled. "One was the very tiny, shimmering tremor, and the second was the abnormal tongue movements, particularly in Gracie."

Filiano believed the children had something called dopa-responsive dystonia — a rare disease that kept their brains from producing a chemical called dopamine.