Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, May 15, 1994 TAG: 9405150039
SECTION: VIRGINIA PAGE: E-5 EDITION: METRO
SOURCE: Associated Press
DATELINE: SPOTSYLVANIA LENGTH: Medium
The Spotsylvania County 6-year-old's effort to keep cool will be more than a matter of comfort or fun; it could be a matter of life or death.
Maria, who has a genetic defect that can cause her temperature to soar so high in warm surroundings that she may stop breathing, will suit up in new clothing designed to regulate her body temperature. The clothing is similar to special suits worn by astronauts, firefighters and race car drivers.
"Her skin gets red hot; it's scary," said Maria's mother, Jeanie. "She gets so hot that to touch her hands, you would think you would get burnt."
Maria's condition is known as 11Q Minus syndrome, a problem related to a missing gene or genes on the 11th chromosome.
On Thursday, Maria received two kinds of cooling garments from the Hampton-based HED foundation, founded to provide such clothing for children who need it.
One of the garments contains a device that is a direct spinoff of the spacesuit technology developed for the Apollo missions to the moon of the 1960s, said John Samos, former director of the technology utilization office at the National Aeronautics and Space Administration's Langley Research Center.
"They needed a system that would protect the astronauts against the temperature extremes on the moon, ranging from minus-70 to 250 degrees" Fahrenheit, he said.
The system includes a device that looks from the outside like a conventional small cooler. Inside are cooling coils, a pump, a rechargeable battery pack and a cord that attaches to a large waistband and to a cap. The waistband goes around the child's torso and helps to regulate body temperature.
The other device the HED Foundation gave Maria is a vest that carries special cooling packs.
HED stands for hypohidrotic ectodermal dyspasis, a condition that involves the absence of sweat glands.
Sara Ann Moody started the HED foundation after her nephew, who has HED, had a medical emergency related to his condition in 1987.
Moody initially contacted Samos at Langley, who put her in touch with a California company that had licensed the NASA space suit technology to make cooling garments for race car drivers, firefighters and others who work in high heat environments. The company, Life Support Systems Inc., made one for her nephew.
The devices cost $500 to $1,600. With the help of funding from PoFolks Restaurants, the HED Foundation has given about 150 cooling garments to children.
by CNB