October 10, 1997
Johnson Space Center, Houston
NASA "Space Suits" Help Brothers With Rare Genetic Defect
Technology being designed to protect astronauts working in space is helping two British youngsters enjoy a more normal life.
A team at NASA’s Johnson Space Center, Houston, TX, recently provided two specially designed "space suits" to 4-year-old Kyle and 2-year-old Ryan Richards of Shotton Colliery, England. The brothers suffer from Polymorphic Light Reaction Syndrome, which is caused by a very rare genetic defect. It is characterized by extreme allergy to light that causes the skin to break out in rashes and blisters. Without the suits, the boys could venture outside only at night. Even exposure to a bright light bulb may cause an allergic reaction.
"An English newspaper journalist approached us earlier this year on behalf of the Richards family," said Robert Dotts, Assistant Director of Technology Transfer and Commercialization at JSC. After discussions with the family, NASA formed a small team and "set about defining suit requirements, identifying possible materials and testing them." Based on test results, NASA engineers decided on a two-layer suit, plus an active cooling system to keep the children comfortable inside the suits.
The suit’s outer layer consists of a white jacket, pants, gloves and head gear, including goggles. The external garments protect the children’s sensitive skin from more than 99.9 percent of the sun’s ultraviolet (UV) rays. The garments are made of a new material that should be available in several months from the Solar Protective Factory, Carmichael, CA. The cooling undergarments, made of nylon/lycra, are based on a design worn by astronauts during spacewalks and sized for the children. The cooling system – shorts and T-shirt fitted with tubes filled with ice-cooled water --is operated by a battery-powered unit worn on the waist.
The JSC team (Dotts, NASA engineers Dominic Del Rosso and Evelyne Orndoff and Dr. Smith Johnston, a NASA physician) delivered the suits to the Richards family, which was on a trip to Orlando, FL, in late September. They accompanied the youngsters on their visit to Disney World to assist with their first extended outing while wearing the UV protective suits. While in Florida, the children also were able to watch a Space Shuttle launch. According to Johnston, the NASA team closely monitored the children in the suits. Testing involved first normal children, then the Richards boys inside the home in Florida, followed by a short excursion outside. After a few minor modifications to the suits, the group made a six-hour excursion to Disney World. "This was the first time Ryan had ever been outside in the daytime," Johnston said.
The suits worn by the Richards children are prototypes of space suits being developed at JSC. "This should be a great way to test the durability of these suits," Dotts said. "Who better to give them a real work-out than a couple of active, energetic youngsters?"
Dotts said the suits’ performance was "fantastic for the first prototypes." He said the team has identified "a few minor changes to the suits to improve their usability." They plan to incorporate them into another prototype suit in the next month.
NASA provided the suits through an agreement with the HED Foundation, Hampton, VA, which since 1987 has provided cooling gear to children with hypohidrotic ectodermal dysplasia (HED) and with multiple sclerosis. HED is a medical disorder characterized by a lack of sweat glands, which can lead to heat exhaustion, heatstroke and even death.
JSC also is working with MicroClimate, Inc., Sanford, MI, which has developed cooling garments using a phase-change material to provide the cooling.
Dotts said he hopes to develop a long-term agreement with the HED Foundation by the end of the year for distribution of similar UV suits to needy children in the U.S. and worldwide. It is estimated that several thousand children around the world suffer from various defects that cause either extreme sensitivity to light or problems in cooling their bodies.
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