NASA "SPACE SUITS" HELP BROTHERS WITH RARE GENETIC DEFECT



October 10, 1997



Ann Hutchison
Johnson Space Center, Houston
281-483-8638

<h4>Release: J97-30</h4> <h3>NASA "Space Suits" Help Brothers With 
Rare Genetic Defect</h3> 

Technology being designed to protect astronauts working in space is 
helping two British youngsters enjoy a more normal life.



A team at NASA&rsquo;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&rsquo;s outer layer consists of a white jacket, pants, gloves 
and head gear, including goggles. The external garments protect the 
children&rsquo;s sensitive skin from more than 99.9 percent of the 
sun&rsquo;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 &ndash; 
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&rsquo; 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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