OROFINO, Idaho (AP) — As cartoons flicker in the background, 3-year-old Nicholas Ashby busies himself in the family room of the modern, double-wide trailer overlooking Orofino Creek.
He climbs in and out of his ride-on toy car, laughing, his favorite Sponge Bob blanket in the passenger seat.
But his mother's glances and constant reminders to be careful hint that the scene isn't as carefree as it seems. Nicholas plays in a darkened room, the shades pulled, the windows blocked with bath towels.
Nicholas has cutaneous erythropoietic porphyria, a rare blood disorder that has been studied by the exhumation of people thought to be werewolves.
The hair is beginning to grow on Nicholas' body, says his mother, Mary Ann Mattson, 39.
She raises his T-shirt to reveal a soft covering of brown hair on his back, the same shade as on his head.
"I know they always say God can only give you what you can handle, but I'm handled out," says Mary Ann, sipping coffee and resting her head on the back of an easy chair.
The open sores on Nicholas' face and hands, healed temporarily by steroids, are flaring up again.
"People 200 years ago didn't know what was going on," says his father, Robert Ashby, 40.
Now doctors realize what once labeled people as werewolves was most likely the same rare blood disorder, which causes the body to produce hair to protect the skin from lesions.
Nicholas is only the seventh child to be treated with the disease in the United States and one of 200 diagnosed in the world. Although his parents are divorced, they have been brought together by their desire to see their son play outside and go to school.
A bone marrow transplant is Nicholas' best chance of ridding his body of the disease, which also will turn his permanent teeth black and cause spleen, liver and heart damage.
But first a donor match must be found, a process made more difficult by the other anemia-related disease Nicholas has.
Then Nicholas and his mother must stay for six months in Salt Lake City, leaving behind her new husband, Doug, and Nicholas' half-brother, Mitchell, 14.
She and Doug had been planning to get married for months, but the plans were postponed to deal with Nicholas' illness. They recently wed at the couple's Orofino home, a move that bonded them closer as they face the challenges ahead.
"What a bittersweet day that was," Mary Ann says.
While it was her wedding day, she kept looking at Nicholas and thinking of what lay ahead. Nicholas' dad also will go to Salt Lake City, getting an apartment and finishing the classes he takes through Lewis-Clark State College.
He is changing careers from his flower shop background to computers.
Nicholas and Mary Ann will spend the first six weeks after the transplant in a sterile room, where few will be allowed in and Nicholas won't be allowed out.
"Leaving Mitchell and Doug is very hard for me," Mary Ann says. "But I have to do what I have to do for (Nicholas.)"
Nicholas was born July 10, 2001, a month before his due date.
A previous stillbirth caused doctors to take Nicholas early.
"When I first delivered him, Dr. (Craig) Ambroson said he was perfect," Mary Ann says, her voice wavering.
But within eight hours, 4-pound Nicholas turned pumpkin orange.
Thinking it was severe jaundice, doctors whisked him out of his mother's room and placed him under bilirubin lights. After six days he was sent home, where his parents were left with unanswered questions about their sick boy.
"He just laid there," Mary Ann remembers. "He just existed."
Development was slow. Even now Nicholas is just learning to talk and weighs only 29 pounds. Although they have introduced potty training, no one expects that to happen soon.
"To get him to eat, you literally have to still feed him."
For most of Nicholas' three years he has had sores on his hands and face. People often stare, Robert says. If they say anything at all, it is to ask if he has chicken pox.
"I wish it was that easy."
After nine months of no answers, Mary Ann loaded Nicholas in the car and headed for Spokane. Doctors immediately admitted him to the hospital.
His red blood cell count was 16,500, dangerously close to brain damage levels. Normal levels for an adult are 4 million to 5 million.
Despite all the tests and machines, doctors could only come up with undiagnosed red blood cell anemia. With no diagnosis, doctors told Mary Ann and Robert to prepare for regular blood transfusions. Nicholas could be transfused every month for 14 years.
"We thought, here we go," Robert says with a sigh.
But as quickly as the symptoms set in, they disappeared.
For nearly a year and a half Nicholas appeared healthy. The sores healed and his parents began to believe the problems were going away.
Then the sores came back with a vengeance. Over the first few months of this year, Nicholas underwent many more tests before a dermatologist in Coeur d'Alene finally closed in on a diagnosis. A geneticist confirmed the blood disorder. He was immediately taken as a patient at Primary Children's Medical Center in Salt Lake City.
A researcher of porphyria was brought in from the University of Utah School of Medicine in Salt Lake City to tend the first live case of the disease in his years of study.
Dr. James Kushner has studied porphyria for 40 years, Robert says, "but he has never seen a walking case of it."
Nicholas and his parents spent four days in Salt Lake City in August, visiting with doctors, geneticists, hematologists and pediatricians
In the end, all the doctors said the same thing: "Mary Ann, he isn't going to have a life if you don't (do the transplant)."
Now Nicholas waits for a call from his doctors in Salt Lake City and a transplant that could help him lead a normal life.