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Fundraiser To Aid Girl With Genetic Disorder

Suncoast News Photo by CHERYL BENTLEY

Ava sits with her cat, Harley, in their Tarpon Springs home.

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By Cheryl  Bentley | The Suncoast News

Published: July 19, 2008

Nov. 9, 2004, at 11:31 a.m.

That's when Ashley and Lewis Davidson learned their daughter Ava had spinal muscular atrophy. The condition is a genetic disease of the nerves affecting voluntary muscular movement, according to the Web site of Families of Spinal Muscular Atrophy.

"I just started crying hysterically," Ashley recalled. "I wanted someone to hug me. I felt really alone."

The disease affects crawling, walking and head and neck control and is found in one of every 6,000 babies. It does not affect intellectual ability.

In Ava's case, the bright, chatty 5-year-old cannot walk.

Walkathon planned

To help her move and stand, the Davidson's church, Unity Church of Palm Harbor, is sponsoring a walkathon on Saturday, July 26, to raise funds for a mobile prone stander that will allow Ava to walk. It can also be made into a wheelchair. She now has only a wheelchair.

It is a way to get the community involved in a project that has touched Unity's congregation deeply, said the Rev. Geri Glinksi. With other children who have attended Sunday school, Ava returns to her parents at the end of the service every Sunday, Glinski said.

"When she wheels herself down the aisle and turns around, and people see her face, they tear up. There's such a radiance and light about her. She touches the heart."

Walking is important both physically and psychologically for Ava, said her mom. It will help prevent sores from too much sitting and scoliosis, curvature of the spine, by keeping the spine more upright. It both stretches and strengthens hip, abdominal and knee muscles and allows her hands to be free.

It will also permit Ava, who starts school next year, to be more like the other children.

"She'll be able to be level with all the other kids, not sitting down. She'll be able to walk through the lunch line," said Ashley.

It will also give the family experiences they've never been able to enjoy together, Ashley noted wistfully. "I've never been able to walk with her. I've always had to push her in a stroller. It would be nice to walk normally, with her next to me."

Big expense

The state-of-the-art Standing Dani Wheelstand costs about $10,000 and is not covered by Medicaid. Ashley, who is a mitigator for a mortgage company, and Lewis, who has recently been laid off from his marketing and promotion job, can't afford to buy the Standing Dani for Ava.

Both her condition and the extensive, painful medical procedures she had to undergo before it was diagnosed appear to have been unable to tamp down Ava's joy. Wreathed in smiles, she showed no shyness when introduced to a stranger recently. She had just watched a television program about predator and prey and decided she wanted to be the predator – a dragon predator, of course – and proceeded to make dragon noises.

"She teaches us about the simple things, to love and appreciate the little moments," said her dad Lewis.

Ava's slowness in doing simple tasks has brought a new dimension to her parents. "She sees butterflies and trees and picks flowers," her father observed. "Only by moving slow do you notice things. It is a lesson we can all learn from, to see the wonder in everything."

A lesson

Ava has also taught him to ask for help, he noted, something that had been hard for him to do. His request for assistance in getting the Standing Dani was what set the wheels in motion for the walkathon.

Organizers are hoping area residents, not just church members, will participate. The event will take place on the church's 4.5 acres of wooded, shady grounds from 8 a.m. to 5 p.m.

For more information, go to the Web site at www.walkforanangel.com, or call Lewis at 727-543-1268.

Cheryl Bentley can be reached at 727-815-1069 or cbentley@suncoastnews.com.

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