Disorder Turns Half Of Girl's Body To Bone -- `Fracture Healing Gone Mad' Doesn't Stop Her (Mentions Robin Nason Newton)
PORTLAND - The right half of 11-year-old Robin Newton's body, along a dividing line that runs straight down her spine, is as hard as stone. The left half is normal.
Robin suffers from an extremely rare and mysterious disease in which the muscles become ossified, or turn to bone.
But doctors say they have never seen anything quite like Robin's condition, in which normal tissue is symmetrically separated from diseased.
Because one side of her jaw is affected, her teeth are clenched shut. She can move her lips and talk through her teeth, but eating is a problem. Last week, doctors removed several teeth and put a feeding tube in her stomach.
Robin can walk but has trouble getting around. Her right leg is eight inches shorter than her left, and bone spurs have made it painful for her to wear a lift in her shoe. Doctors removed the spurs last week to ease the pain.
Still, Robin is an active youngster who gets up early in the morning and goes to bed after midnight "unless we wear her out first," said her foster mother, Ella Newton.
Robin lived in a Mexican orphanage until she was 9.
Robin's condition is known as limited intramembranous heterotopic ossification. The bone spreads through tissue and muscle to the dermis, a second layer of skin below the surface layer. It does not affect her organs.
"This is sort of fracture healing gone mad," said one of her doctors, Kent Vincent, a professor of orthopedics at Oregon Health
The disease itself is not fatal, Vincent said, although the sedentary lifestyle it can force on its victims slightly decreases life expectancy. "But for Robin, since she's completely mobile, I would expect she'd have a normal life span," he said.
Robin is in a special-education class in school, but doctors say the disease probably has not affected her intelligence.
Robin, who was born in Mexico City, was among dozens of handicapped children adopted by another Oregon couple, Diane and Dennis Nason.
Newton and her husband, Floyd Newton, a supermarket produce manager, have had her since May, when the Nasons said they could no longer care for her. Since then, the Nasons have lost custody of all their children because of allegations of child abuse. They have denied the allegations.