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Fund-Raiser to Help Cerebral Palsy Kids

Tommy Nash is a 9 1/2-year-old Centreville boy with a smile as bright as sunshine. He also has cerebral palsy, and a fund-raiser slated for Sunday, May 15, at the Fairfax County Government Center will help send him and kids like him to a six-week, nonprofit, therapeutic summer camp.

The Cerebral Palsy Ability Center's Walk-n-Roll A-thon and it's from 1-3 p.m., rain or shine. Those able to walk will go on a nature trail behind the building, and those in wheelchairs will go around a courtyard.

"Participants obtain pledges for going around the route a certain number of times," said Tommy's mom, Tricia Nash of Sully Station. "We have 32 kids, ages 2-13, signed up for the camp and we hope to raise more than $10,000." (Call 703-920-0600 or see www.cpabilitycenter.org).

The fund-raiser's critical because tuition at the Arlington camp isn't covered by insurance. It's $2,800 for children Tommy's age and $1,800 for preschoolers.

"And if we raise enough money, we grant scholarships to children whose families couldn't otherwise afford the camp," said Nash. (Tax-deductible contributions may be made via the Web site).

Tommy was born 10 weeks premature and his lungs weren't fully developed enough to function on their own, so he was placed on oxygen. But he had to be on it for so long that he suffered brain damage to the part of the brain controlling motor or muscle movements.

Wheelchair-bound and unable to use his arms or legs, Tommy also can't speak. But he's a bright child who understands everything going on, and he communicates through body language, facial expressions and a Dynavox — a computer-like device that speaks for him.

A THIRD-GRADER at Deer Park Elementary, he's in regular classes for art, music, P.E. and science, and special-education classes for math, reading and writing. He especially loves music class, listening to his classmates sing songs and play recorders.

Tommy's second-favorite class is P.E. "He's got a really great, adaptive P.E. teacher who brings in special equipment for him," said Nash. "For example, they have a jump rope with Velcro on one handle, and he wears a Velcro glove enabling him to hold the rope while a child at the other end twirls it. He loves it and so do the kids; they like him a lot."

Last week, he went on a field trip to Luray Caverns with the whole, third-grade class and had a great time. Tommy also likes his parents reading mysteries to him, watches "American Idol" on TV and enjoyed seeing the movie, "The Incredibles." And he takes therapeutic horseback riding and loves swimming.

He also has fun with sister Rachel, 2. "She's very caring," said Nash. "She'll bring him things and always includes him in whatever she's doing. For example, she'll throw a football to him or put things in his hands to hold."

"He reacts to us and smiles and laughs when we talk to him or even just walk in the door," said Tommy's grandpa, John Nash of Fairfax. "My son [Greg] and daughter-in-law are so exceptional in the care and attention they give him. They incorporate him into their daily lives and balance attention between the two children."

And Tommy and his grandpa are great pals. "We'll giggle a bit and, in warm weather, I take him for a 'walk,'" said John Nash. "He likes being outdoors. I'd give anything — probably my life — if he could be an average child. But we look for the little blessings in him and give whatever blessings we can, back to him."

During the year, Tommy gets physical, speech and occupational therapy at school. But the therapy stops over the summer and is replaced by six weeks of "conductive education" at the Cerebral Palsy Ability Center's camp.

THE PROGRAM was developed in Hungary, and teachers are called "conductors." And instead of children seeing three, different specialists, conductors know all three types of therapy, plus education, and how best to combine them to benefit the children.

This will be Tommy's fourth year, at camp. Last year, said his mom, "He improved strength through his trunk and achieved better head control. He can sit up and hold his head up without support for maybe 20 seconds, instead of 10; every little bit helps. This year, we expect him to make even more progress."

The camp runs from July 5-Aug. 12 and help attendees work on their speech, gross- and fine-motor skills, social skills and personal hygiene. "It's six hours a day, five days a week, so they've got lots of time to work on all the body parts," said Tricia Nash. "He and all the kids love it because they have fun. And because they've been there before, they've bonded and are friends. You can see it in their faces — it's incredible."

Children are grouped by age and do lots of singing because it's a good motivator for them. "And the kids motivate each other to keep going," said Tommy's mom. "The work they do is not easy. I'd compare it to a professional athlete training — they push them that hard."

The center offers programs all year 'round, and Tommy's on a waiting list to go there during the school year because, then, there's only one full-time conductor. "So we also hope to raise as much money as we can to hire a second conductor for the regular year," said Nash. "They come from Hungary and there's only one place that trains them, so they're in great demand."

Money's also needed, she said, because the center must soon vacate its donated space in Arlington and "we don't yet know where it will be relocated. It needs a small office and a 150-square-foot room for therapy." Anyone knowing a space available for donation may call Tricia Nash at 703-251-0820.