PORTLAND — Every three months a bit of James Wilson Coleman dies. A rare genetic disease ravages his body and brain.
The boy who once played baseball has spent the past three years in a Gresham nursing home. At 16, he is by far the youngest resident.
"Time's precious," his mother, Theresa Coleman, said this afternoon after picking up her son for an outing to the Rose Garden for the "Walking with Dinosaurs" show.
The nightmare began for Wilson — what everyone calls him — when he was about 6. His mother noticed that he kept stumbling.
"He had no control," she said. "He'd be walking and would just fall over. I couldn't take him for a walk because I was afraid he'd fall into the street and be hit by a car. We'd take him to the doctor, and it looked like he was being beaten."
She also noticed that he was falling behind developmentally, emotionally and intellectually.
"One day he'd play baseball and then he couldn't," she said. "He'd get angry. He wouldn't wear his shoes. We thought he was handicapped."
Doctors eventually discovered that Wilson has Type C Niemann-Pick Disease. Coleman said doctors have told her there are only 500 cases worldwide. He deteriorates, his mother said, about every three months. The disease is fatal.
"I've learned about this disease," she said. "I know that one day my boy is going to go to sleep and that will be the end."
Until then, Coleman and her ex-husband, David, look for ways to let Wilson enjoy the world the best he can, usually in three-hour blocks. He needs a feeding tube for nourishment and water and can't be away from the nursing home for long.
As a boy, Wilson loved dinosaurs. When his mother learned of today's show, she called Rose Garden administrators and told them that she would like to take Wilson but that the boy can't be in crowds because of his weakened immune system. Officials offered the free use of a private suite.
This afternoon, Coleman and her ex-husband pushed Wilson's wheelchair through a crowd lined up outside the Rose Quarter. Wilson wore a bright yellow Oregon Ducks sweatshirt and smiled. But he seemed to be unable to control his eyes and couldn't respond to questions.
"He can't talk," said David Coleman, who legally adopted Wilson when he was born. Theresa Coleman said the birth father wanted nothing to do with Wilson. Even though the Colemans are divorced, they remain "good friends" and are devoted to Wilson. The couple also have a younger son.
"We try to get him out of the nursing home once a week," David Coleman said.
Once settled in the suite, the Colemans pushed Wilson's wheelchair to a spot where he'd be able to see the dinosaurs. Just below him, seats filled with children and their parents.
"I don't know what's harder," Theresa Coleman said. "Is it giving him up to God or giving him back to that nursing home? I already know what one feels like." She stared into the darkened floor.
"I guess all I want," she said, "is a chance to say my goodbyes."
She stepped over to her son. They sat together, waiting for a kids show to begin on a Saturday afternoon in Portland.