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Saturday, October 27, 2007

Once every month, a church rec room turns into a smile haven

Slideshow

Carol McCulloch, founder of the Spina Bifida Association of the Roanoke Valley, runs under a multicolored tent with 4-year-old Katie England, who has spina bifida, during the Fall Fun Festival on Friday night at Cave Spring Baptist Church.

Kyle Green | The Roanoke Times

Carol McCulloch, founder of the Spina Bifida Association of the Roanoke Valley, runs under a multicolored tent with 4-year-old Katie England, who has spina bifida, during the Fall Fun Festival on Friday night at Cave Spring Baptist Church.

Even though Rebecca Whitley was recovering from a case of MRSA, she came.

Friday's rain and cool weather didn't deter 15-year-old Cody Wood or his family from coming, either. As Whitley entered Cave Spring Baptist Church on Friday night, Cody welcomed her back to the Friday Night Friends event.

They were among special-needs children and adults from around the Roanoke Valley that meet the last Friday of each month to socialize, play games and "breathe easy," Cody said, like everyone else after a long week.

The church's recreational room was filled with children playing in a "moon bounce," with basketball, face painting, books, board games and other activities. After eating and briefly welcoming Whitley, Cody went to play chess.

Whitley, 37, wasn't up to her normal activities of book reading and basketball this month, as she entered the church building in a wheelchair with an IV and oxygen cords. She was released from the hospital Tuesday after battling a staph infection, but the program is something most participants never want to miss.

More than 80 people attended the Fall Fun Festival, sponsored by the Spina Bifida Association of the Roanoke Valley, on Friday. It's where children and adults such as Whitley can relate, said Karen Switzer, president of the SBARV, because surgeries will always be part of their lives. She said the children at the event have had more than 100 surgeries combined because of complications with the permanent disability that impairs the spine.

Cody said the event gives him a chance to be comfortable in a nonjudgmental environment. At Franklin County High School, he said, he is often the subject of taunts and cruel jokes from peers. Their words sting, he said, as other students call him crippled and he can't explain why.

Gantulga Tsolman, 15, a newcomer to Friday Night Friends, said he, too, experiences bullying at school. Some students at Hidden Valley High School repeatedly push him into a locker, but his friends help when they can, he said.

As Gantulga and Cody played chess, they talked about the television series "Nip/Tuck" and shared stories of walking with leg braces.

Gantulga's aunt, Enka Isend, said she was pleased to see him being sociable.

"I'm just trying to make him happy," she said.

Whitley was all smiles Friday night. All the children were, too. They live with the disability every day, but when they are around one another, they are energetic.

Welcome to their world, said Carol McCulloch, founder of the SBARV. It's a world where disability isn't considered synonymous with disadvantage; where people look beyond physical and mental features; and where children learn that beauty derives from differences.

The festival and other Friday Night Friends events are a collaboration among the spina bifida organization, Down Syndrome Association, Autism Society, Roanoke Valley Baptist Association and Grandin Court Baptist Church.

What began as a support group for five families five years ago has become an affiliate with a national organization, has gone from meeting in the Vinton Public Library to meeting in its Roanoke office, and has expanded from helping a handful of children to creating statewide and national initiatives to extend the influence of the organization far beyond Cave Spring Baptist Church.

And most members and collaborating organizations say the events will only improve.

They credit McCulloch as the force that galvanized local families into action after attending the Blacksburg chapter's Friday Night Friends event.

McCulloch said the services were needed in the Roanoke Valley and that they provide her with an opportunity to revive the work of her late daughter, Carly.

"She was my role model," McCulloch said, as she prepared for the festival. While rubbing a cross on a chain around her neck and looking out to the rain, she described Carly as a hero who always fought for people traditionally seen as underdogs.

"We're going to live again, and we're going to go again," McCulloch said.

Activities and meetings vary with chapters around the nation, but each offers a safe environment for children with disabilities and their siblings and provide an evening of entertainment.

"We all have a heart for people that have to try harder just to do the norm," McCulloch said.

Children such as Gantulga and Cody will have a chance for a productive and social life, thanks to programs such as Friday Night Friends, said Rebecca Whitley's father, Jim Whitley.

Decades ago, a typical family would have institutionalized their child, he said. But now, society is becoming more welcoming and open, he said.

"That's why we exist," Switzer said. She said the association is helping place all children on the same level, providing more information to families and stressing the effects of spina bifida.

"This is finally a national agenda, a cooperation effort between the CDC [Centers for Disease Control and Prevention] and big-name groups. At least something is happening now to find out what causes this and how to prevent it."

But the principles of the group will remain the same, no matter what agendas may rise in the future, McCulloch said. Each child at the event is special and beautiful, and none is less capable than anyone else, she said. She wants to make sure the children and families all leave the event with that feeling.

"We're here for some reason," McCulloch said. "Help somebody."

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