Thanks to NASA, a Child Finally Gets to See the Light

William Robert “Rob” Lucas III is a precocious 10-year-old with dark brown hair, blue-gray eyes and a killer smile. He’s bright, revels in teasing his two sisters, rides his bike and plays soccer with his pals.

But until recently, Rob could play outside only at night.

He was born with a rare metabolic disorder that causes his skin to swell, blister and turn red whenever exposed to direct sunlight.

“I just felt pain, like a thousand knives were going into me,” he said in an interview recently at his home in the Tuscarora Mountains some 30 miles west of Harrisburg.

What changed Rob’s life was new clothes--a pair of special suits, designed and tested by a team of NASA engineers and a company in California. The suits protect him during normal daytime activities.

The outer layer of each suit is a tightly woven cotton-Lycra blend that blocks out 99.9% of UV light. He wears a jacket, pants, gloves, masks, goggles and a life preserver-like garment filled with a frozen gel that keeps him cool. In the ensemble, Rob resembles a spaceman.

His family, and their neighbors in Blain--population 270--raised nearly $6,000 to pay for two suits.

No one knows how many people have Rob’s disease, erythropoietic protoporphyria, or EPP. But Dr. Micheline Mathews-Roth, an associate professor of medicine at Harvard Medical School and an EPP expert, estimates that fewer than 20,000 Americans have the disorder.

Jane and Bill Lucas first noticed something was wrong with their son when he was 3. Thinking it was just a conventional allergy, they changed his diet, laundry detergent and the soap they bathed him in. But it was not until last year that he was diagnosed with EPP.

The story of Rob’s suits started more than a year ago, when a British woman, Eleanor Richards, posed a simple question to NASA: If it could develop clothing to protect astronauts in outer space, could it find a way to help her two grandchildren lead normal lives?

The answer, after much research, was yes.

The Richardses had been covering their windows with blankets and using 25-watt light bulbs because Kyle, 5, and Ryan, 3, have a disorder similar to Rob’s--polymorphic light eruption--that made exposure to any light painful.

“They never went out in daylight, they never played with other kids . . . they only played on the swings in the winter in the dark,” Richards said.

Employing the same technology designed to protect astronauts working in space, a team of NASA engineers, a doctor and Robert Dotts, assistant director of technology transfer at the Johnson Space Center in Houston, helped make the pint-size suits.

The team tested materials that blocked out most of the sun’s rays but found only one company willing and able to develop a material sturdy enough to resist ultraviolet light: the Solar Protective Factory in Carmichael, Calif.

SPF’s president, Terry Breese, met the Richardses in Orlando, Fla., to deliver the suits last year. NASA also contracted with the HED Foundation to test and evaluate both prototypes as the boys put them through their paces. James “Mikey” Walker, a 6-year-old who lives in Virginia Beach, Va., also received a prototype.

The results are Rob’s suits.

The HED Foundation, in Hampton, Va., provides cooling gear to children with hypohidrotic ectodermal dysplasia, a disorder characterized by lack of sweat glands.

Sarah Moody of the HED Foundation said children with these disorders are “trapped in their bodies; they can’t do what we can do.” With the suits, “they can be more normal.”

Mikey’s mother, Angela Walker, approached the foundation three years ago to request its help in getting some cooling gear he could wear under the layers of clothes that protected him from the sun.

Richards calls the suits “brilliant, immensely brilliant.” Before the boys got their suits, “we couldn’t let them go out because they would break out in massive blisters,” she said.

Just like Rob.

Now, instead of surfing the Internet or fixing dinner, he can play outside with his buddies who have devised a special game for their friend in the “spacesuit.”

“Star Wars,” he says with a laugh.