Phyllis and Jim Whitley quickly stuffed envelopes with pamphlets at the Roanoke Spina Bifida Association's office as their daughter watched and smiled from her wheelchair.

"Thirty-seven years ago when she was born, this information wasn't available," said Phyllis Whitley as she looked at her daughter, the first child born with spina bifida in the Roanoke Valley. "This is a godsend."

The Whitleys were making educational kits for parents, like them, who have children with spina bifida, the most common permanently disabling birth defect in America. The couple also gathered information for new mothers on treatments to prevent the defect, which occurs when the spinal cord is disfigured.

Phyllis Whitley said that in 1971 her family was nervous when they discovered her daughter, Rebecca Whitley, had spina bifida. They wanted to make sure she received the most appropriate care.

"A couple of families said she wouldn't live past 12 years old," Phyllis Whitley said as her daughter began to cry. "My mother said we are going to take her home and love her."

Phyllis and Jim Whitley also volunteer with the association's Friday Night Friends program, held the fourth Friday of every month. At the program, couples can leave their children in the care of volunteers, physicians and nurses at no charge. Children are welcome to attend no matter what their disability, but at this time, the organization does not have the resources to monitor children who need ventilators.

Carol McCulloch, the first president of the Roanoke Valley Spina Bifida Association, said they are working on different measures to include all children.

Many of the participating parents are so engulfed with their child's care that they don't relax, she said, but the organization wants to provide a night for children to safely socialize with others their age while their parents have a moment to themselves.

"Our mission is to promote the prevention of spina bifida and to embrace the lives of all those affected," McCulloch said. "And those aren't just words."

The organization will have a change from its regular Friday night program on Oct. 26, when members plan to host a fall festival in collaboration with other groups. The festival, free for families of children with mental and physical disabilities, will begin at 6 p.m. at Cave Spring Baptist Church.

"It's good for all of them to get together to see each other's differences but to see they are all just the same," Phyllis Whitley said of the children participating in the Friday events.

She smiled and looked at her daughter again as she spoke of the spina bifida group.

"All of them have feelings and are able to do something," she said. "She feels like she's worth something now since she's gotten involved."