Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, February 6, 1992 TAG: 9202060020
SECTION: NATL/INTL PAGE: A-5 EDITION: METRO
SOURCE: Associated Press
DATELINE: PORTLAND, ORE. LENGTH: Medium
DISEASE THAT HARDENS BODY HASN'T TAKEN GIRL'S SPIRIT
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 said 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 8 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.
"She has a spirit that is uncanny as far as I'm concerned," Ella Newton said. "She has a will to live and a will to do whatever is required to make her as normal as possible."
Robin's condition is known as limited intramembranous heterotopic ossification. It is related to another disorder called fibrodysplasia ossificans progressiva disease, which turns skeletal muscle to cartilage.
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.
The disease itself is not fatal, Vincent said, although the sedentary lifestyle it can force on its victims slightly decreases life expectancy.
Doctors said they know of about 200 cases of fibrodysplasia ossificans progressiva. Robin's condition is even more rare, said Fred Kaplan, chief of metabolic bone diseases at the University of Pennsylvania Medical School.
Kaplan, who has studied Robin's case, said has known three patients with the disorder but none as severe. Robin is believed to be the first person with exactly half of her body affected, according to Vincent.
The exact cause of the disease is unknown. While there is no cure, doctors and the Newtons said they're trying to make life easier for Robin.