Story Published: May 6, 2010 at 11:15 PM PDT
Story Updated: May 7, 2010 at 10:46 AM PDT
Ed Impala
Ed and his twin brother Frank were born in Redmond in 1956. As a child, Ed could never keep up.
"My balance was bad. My body was always pulling me back. The fatigue was severe. My parents took me to doctor after doctor, and they'd say, 'He'll outgrow it,'" says Ed.
But he didn't outgrow it.
In fact, by the age of 20, Ed's symptoms had progressed. A neurologist finally gave him a diagnosis.
"It appears you have a slight case of cerebral palsy," he told him. "We know you're a second-born twin, there's about eight minutes between the birth of your brother. You must have had some oxygen deprivation that caused you to have this neurological problem."
Over time, Ed's wife of 30 years, Tami, and his three children watched their father repeatedly fall and finally lose his ability to function.
In desperation, they went to the Mayo Clinic where for five days they probed, prodded, drew blood and scanned every body part.
"After five days they said, 'You're healthy - you must have what the doctors thought you had when you were 20 years of age - a slight case of cerebral palsy,'" he says.
Tests for Lyme disease, heart disease - even a spinal tap - all came back normal.
His son Dominic said, "In the last three years it was progressively getting worse on the extreme scale. We had to help him do everyday activity. He couldn't even use a knife and a fork."
Ed's daughter Nicole quit her job to stay home to help drive her dad to doctor appointments and to care for him.
"By the end of the day he'd just be hunched over and be mumbling, so it was really hard by the afternoon to understand what he wanted and what he wanted to say," she said.
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His daughter Michelle said, "It was so bad, I was mentally preparing for my dad to pass away."
Ed spent most of his time in bed or in his transport chair. He decided to visit his twin brother Frank in Virginia, to say goodbye.
But Frank refused to give up on his brother, still believing doctors were missing something. So he kept researching.
"He came up with this website out of the U.K.," Ed says. "It had this condition called Dopa Responsive Dystonia. Of the six symptoms it listed, I had all six of them my entire life."
The website featured the story of a little boy named Harrison Colegrove. His symptoms mirrored what Ed had been facing.
Harrison had the rare genetic disease which keeps his body from developing dopamine, which helps the brain communicate with the muscles in the body.
When Harrison took the drug, he was transformed.
"I could actually do stuff I'd never done before - it was amazing," Harrison said. "In the next few months I took a few steps!"
But would it work for Ed?
Ed took one dopamine pill with dinner and one before bed. The next morning, Ed says, "I went in the bathroom. I thought, maybe I'll brush my teeth. And I was fine."
Through tears, he says, "And I thought, well, maybe I'll try to shave - and I was fine!"
Ed got himself dressed and made his way into the kitchen where he sat and waited for his son, Dominic. When Dominic saw the transformation, both cried and hugged.
"He got up and walked normal - like it was just a normal day in the life of Ed, which was not the case," Dominic says, laughing.
A lifetime of disability was gone overnight. Genetic tests confirm Ed never had cerebral palsy. Dopa Responsive Dystonia is so rare, only 150 people have it the United States. It affects one in 2 million people.
Ed hopes his story helps someone else.
"Nowadays, they catch it in children. They discovered it in 1976, the same year I was diagnosed with cerebral palsy. So I just happened to slip through the cracks. Maybe there's someone else out there like me."
Ed will take three pills, once a day, for the rest of his life. He's off disability, doing physical therapy, and back to work.
"A lot of people have told me - are you mad or angry? I say I feel so good, I'm really not mad. Am I disappointed? Yes, I told my doctor this would have been really sweet to find out 30 years ago!"
But the Impala family says the experience has shaped all their lives. They have tremendous compassion for people with disabilities.
Dominic says, "It's a life-changing experience for all of us. It's like our father's reborn again."