Homemaker Turns to NASA to Help Children Who Have Rare Birth Defect

Sara (Tootsie) Moody proudly shows a videotape of her 10-year-old nephew, Stevie Roper, riding his bicycle and raking leaves with his father.

Not so long ago, those routine activities could have killed Stevie, who suffers from hypohidrotic ectodermal dysplasia (HED), a lack of sweat glands that can cause the body to overheat.

But a phone call to NASA in July, 1987, has led to a new, active life for Stevie and hope for hundreds who suffer from the same rare birth defect. An estimated 400 children in the United States suffer from HED.

“All I did was make a phone call and the rest fell into place,” said Moody, 49, a homemaker and president of the HED Foundation she formed in March. That call, made after Stevie became overheated in a car and almost died during a visit to Hampton, was to NASA’s Langley Research Center.

Moody got the idea from watching a TV movie about a young man who lacked an immune system and lived inside a protective bubble designed by the National Aeronautics and Space Administration.

NASA directed her to Life Support Systems Inc. of Mountain View, Calif., which helped develop a cooling system for space suits and now makes “cool suits” for firefighters, race car drivers and nuclear plant workers.

The company designed a child-sized vest and cap that Stevie could wear as a personal air conditioner. A portable cooling pack powered by a battery circulates chilled water through tubes to the vest and cap.

Knowing that Stevie’s parents in Waynesville, N.C., couldn’t afford the suit, Moody designed a poster, collected her dill pickle jars and set them on counters at PoFolks, a restaurant chain managed locally by a friend.

The jars and a fund-raising effort by another friend brought in more than $5,000. But Life Support Systems agreed to sell the suit at cost for $2,600, so the rest of the money went for Stevie’s care.

After a brief flurry of publicity about the suit, Moody went home and settled down again. Then the telephone started to ring.

“You wouldn’t believe the people who started calling that had this problem. Everybody said, ‘Look, why don’t you form a foundation and go on to help those other children?’ I thought, well, why not?”

Since she started the foundation, suits have been delivered to children in Birmingham, Ala.; Knoxville, Tenn.; Tucson, Ariz., and Kuwait.

“Here we were already gone national and now then international, pow!”

PoFolks restaurants across the country have jars to collect money for the HED Foundation, said Carol Koenig, marketing manager of the Nashville-based company. The campaign would not have started without Tootsie Moody, she said.

“She is tireless. She just keeps going, will not take no for an answer. But she does it in a way that doesn’t offend anyone.”

Twenty-seven children are waiting for suits to be made and the money to be raised to pay for them. The foundation has raised more than $16,000, most of it spent to buy suits, which have also helped multiple sclerosis and cystic fibrosis patients who need to avoid overheating.

Aside from helping the children survive, the suits have brought together HED victims who told Moody they had never known anyone else with the same condition.

“It’s made a different person out of Stevie as it has these other people,” she said. “They no longer feel like a freak. They’re out as a normal human being except for no sweat glands. I think it’s done good in a lot of different ways.”