Plenty of kids get new outfits for the opening of school, but nothing like Travis Parker’s NASA-engineered blue space suit. Protected by its Solar Weave, a fabric that blocks nearly all of the sun’s ultraviolet rays, Travis has begun venturing out into daylight without fear for the first time in his life.
Since birth, Travis, who lives in Old Fort, N.C., has suffered from Gunther’s disease, a rare genetic disorder that makes him allergic to sunlight. The briefest exposure results in agonizing itching and angry blisters that produce slow-healing sores. While his sister Casey Rose, 7, played in the sunshine with other kids, Travis could only peek from behind Venetian blinds. “Mom, what if I got a great huge icecube and threw it at the sun?” Teresa Parker recalls him asking. “Maybe it wouldn’t burn me anymore.”
On drives to school, Travis—clothed from head to toe even in the hottest weather—had to hunch down on the floorboards. Then when he arrived, “we’d open the car door and yell, ‘Run, Travis, run,’ says Teresa, 37, a homemaker. At recess he had to stay inside, always. “It would break your heart, seeing him sitting there in the shadows crying,” says his father, David, 51, a sometime car reconditioner.
Then last February, Travis’s mother learned about the modified NASA space suits. To pay for one his parents raised $2,000 in their small Blue Ridge town, and schoolmates pleaded with NASA to provide Travis a suit. “His skin is so white he looks like a ghost,” one wrote. Now, “he’s like a bird,” says his mother. “He’s free.”