This may be just the start of another week for most people, but for two little girls, it will be a red letter day as they do something most people take for granted – the chance to go outside and play on a nice sunny day.
The two girls, Amanda Clanton, 9, from Crosby, Texas and Erica Lumas, 6, from Honduras, both suffer from what is known as xeroderma pigmentosum or, XP disease. The girls can not tolerate exposure to either the sun’s strong ultraviolet light or even bright indoor lighting and are forced to remain inside, in darkened rooms all of the time.
All of that will change when the girls and their families meet this week with JSC officials along with representatives from the non-profit HED Foundation and Related Disorders of Hampton, Virginia organization and they each receive a special UV protection suit that was developed from space-based technology.
The protective suits include 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 UV rays. Underneath, the children wear a small cooling support system, necessary because full-body UV suits can get warm. The cooling unit has no moving parts, using 4 gel packs in a vest-like garment. The gel packs can supply cooling for two to four hours and can be recharged in a refrigerator in about 30 minutes.
The suits have made a huge impact in the lives of those who have used them, enabling them to go outside in daylight for the first time. The HED organization., through agreement with Johnson Space Center’s Office of Technology Transfer and Commercialization, has begun providing suits to the children who need them. It is estimated that several thousand children around the world suffer from various diseases that cause either extreme sensitivity to light or problems in cooling their bodies.
"It’s amazing to think that because NASA astronauts walk in space and on the moon, children can now play in the sun," said Sarah Moody, the HED Foundation’s founder and president. The suits are designed to cost under $2,000 and are now available in various colors. Many families, after years of having to deal with the restrictions of the child’s condition, can live more normal lives.
The organization began in 1986, when Moody sought help from NASA’s Langley Research Center, Hampton Virginia, in finding a cooling garment for her nephew, who suffered from hypohidrotic ectodermal dysplastia (HED). Victims of HED lack sweat glands, which can lead to heat stroke, heat exhaustion and even death. The foundation also provides cooling garments to children with multiple sclerosis, spina bifida, cerebral palsy and other disorders.
A documentary on that use of technology was widely televised, resulting in the creation of the foundation. Moody says people and organizations she refers to as her Angels Network have made a huge difference.
In 1997, the Johnson Space Center, seeking a broader use for spacesuit technology, offered Moody the concept for the UV-protection garment and a fashion model donated money to the foundation. Word spread and more donations came from other sources.
The first three suits distributed were prototypes provided by NASA. The foundation has provided 15 additional UV suits, most to children suffering from XP disease. The most recent was in January – it went to a 5-year-old girl in Keystone Heights, Fla.
For more information, contact the HED Foundation at Box 9421, Hampton, Va., 23670, or at http://www.hedfoundation.org.
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