MANCHESTER, N.H. -- When your child is sick, you bring him to a doctor and he gets better. So what happens when your child's illness doesn't have a name, doesn't have a treatment, and is quickly robbing him of his ability to move?

WMUR's Jennifer Vaughn said that a Bedford family is searching to find the medical miracle that can bring their children back to them.

"The severity of it shocked the pediatrician. He said, 'I'll send you to a neurologist but I think there's something wrong with his leg. I don't think it's anything frightening,' but I had a feeling that I was," mother Ellen Colegrove said.

Colegrove was right. She and her husband, Mark, were about to enter a medical maze they could never have imagined. Their son, Harrison, the second born, never seemed to crawl right, he walked late, and was so wobbly that by age three he could barely stand.

Then, the Colegroves' third child, Gracie, showed the same symptoms -- symptoms that looked like cerebral palsy, but weren't.

The children were quickly deteriorating and the Colegroves frantically tried to find out why. The family traveled to specialists in New Hampshire and Boston and underwent painful tests over and over again.

"We had some bright folks looking at them trying to figure out what was wrong. Nobody was coming up with anything," father Mark Colegrove said. "He went into a wheelchair in 1997 and was able to maneuver it fairly well, but then in the tape he lost the ability to move the joystick around. It went very quickly. It was very frightening."

The children needed constant care. Their minds were intact but their bodies were becoming paralyzed. The Colegroves were warned that they may never know what was wrong with their kids. Until finally, Dartmouth Hitchcock Medical Center's neurometabolic program cracked the case.

Dr. James Filiano gave the family it's first glimmer of hope in a very long time.

"He had researched and he had a plan of action before we even got there he knew what he was going to do," Mark Colegrove said.

"They were doggedly determined to pursue an underlying cause," Filiano said.

Harrison was first to get the right medication. Almost immediately he improved. Then Gracie received the medication and also improved.

There were diagnosed with an extremely rare, genetic disorder called dopa-responsive-dystonia -- a progressive disease that eventually steals all mobility.

Of the family's 5 children, just Harrison and Gracie have it.

They were prescribed a drug often given to Parkinson's patients and other drugs to control side effects.

Now, their wheelchairs collect dust in the garage. Harrison is a purple belt in karate and Gracie is a tough competitor at her gymnastics meets.

For the parents who never gave up hope, their children have finally come back. The medical miracle they feared would never come, has.

"They'll be dependent on therapy but they'll have full lives," Filiano said.

Filiano and the Colegroves are hoping they can bring awareness to this very rare disorder. Filiano suspects there are as many as 10 people in New Hampshire and Vermont suffering from this, but may not have had it properly diagnosed.

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