For eight years, a Texas boy has lived his life in darkened
rooms, his body not able to tolerate direct sunlight. Even
bright indoor light endangers his delicate skin and can raise
his body temperature to deadly levels. However, on April 23,
Cardi Hicks gets to do something he’s never done before —
play outside.
Hicks, who lives in Magnolia, about an hour outside of
Houston, suffers from four rare skin diseases that force him
to stay out of the Sun and its potentially harmful ultraviolet
light.
That all changes Monday, with the help of technology from
NASA’s Johnson Space Center (JSC), Houston, TX, and the
Hypohidrotic Ectodermal Dysplasia (HED) Foundation and Related
Disorders, Hampton, VA. Cardi will receive a special UV-
protection suit that was developed from space-based
technology. The suit allows him to go outside protected from
harmful light.
The protective suit includes a white jacket, pants, gloves and
headgear, including goggles. The external garments protect the
child’s sensitive skin from more than 99.9 percent of the
Sun’s hazardous UV rays.
Underneath the protective Earth-bound spacesuit, the child
wears a small cooling support system, necessary because full-
body UV suits can get warm. The cooling unit has no moving
parts, using four 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.
Through an agreement with JSC’s Office of Technology Transfer
and Commercialization, NASA and the HED organization have
worked together since 1997 providing suits to children who
need them. The suits are designed to cost under $2,000 and are
now available in various colors. With the suits many families,
after years of having to deal with the restrictions of a
child’s condition, can live more normal lives.
The organization began in 1986, when HED foundation founder
and president Sarah Moody sought help from NASA’s Langley
Research Center, Hampton, VA, in finding a cooling garment for
her nephew, who suffered from 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.
In 1997, JSC, 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 more than 15 additional UV
suits. Cardi and his family will receive the special suit at
10:30 a.m. EDT in Room 201 at Regents Park, Houston, TX.
For more information, contact the HED Foundation at Box 9421,
Hampton, VA, 23670, or on the Internet at:
