Pounding the pavement for A-T

Rare disease that strikes children difficult to diagnose

It may be hard to believe that there is a disease that combines the worst symptoms of cerebral palsy, muscular dystrophy, cystic fibrosis, cancer and immune deficiencies.

Ataxia-telangiectasia, or A-T, is a fatal genetic disease that affects one in 40,000 children, though some may die from it before being diagnosed. A-T usually confines its victims to a wheelchair by age 10 and often results in death during the teen years.

"There is no cure at this point," says Dr. Robert "Rusty" Turner, a pediatric neurologist at the Medical University of South Carolina. "It is one of my frustrations with medicine. We do disease management. We don't cure a lot."

Turner says the rarity of A-T keeps it off the national "radar screen" and that diagnosing the disease is almost as rare as the disease itself. He's treated only three children with A-T in the past 10-15 years.

One of them, Desmond Washington, 22, of Columbia was recently in Charleston being treated for extreme coughing.

His mother, Gwendolyn Myers, has lived a "nightmare" since Desmond and his twin sister, Deseree, at age 6, first started showing symptoms of what she later found out was A-T.

"One day they were normal children. They were riding bikes. Desmond was about to start basketball. Deseree was about to start dance classes. The next day, they were stumbling without explanation," recalls Myers, who is 43 and had a hard time keeping a job because of caring for them along with two healthy children.

Their health slid downhill rapidly from there as they lost control of their muscles. They exhibited symptoms of cerebral palsy and multiple sclerosis and weren't diagnosed with A-T for two years. Deseree died at 14. Desmond has survived longer than most.

"It has been an ordeal, and it still is," Myers says. "... To this day, it is something I still don't understand."

Unlike more common diseases, such as cancer, public awareness of A-T is practically nil, but it has been getting a boost in recent weeks thanks to the efforts of an ultra-distance runner with the A-T Cure Tour. The tour raises money for and awareness of the A-T Children's Project, which supports biomedical research on the disease.

Tim Borland, 31, of Los Gatos, Calif., is undertaking 63 marathon-distance runs in 63 consecutive days.

It started at Disneyland in Anaheim, Calif., on Sept. 3 and is scheduled to end with the ING New York City Marathon on Nov. 4. In each run, he pushes an "adult mobility jogging stroller" with an A-T patient, or it is empty.

The tour makes a stop in Charleston for Borland's 52nd marathon Wednesday.

The organization contacted local runner Lennie Moore, a member of the Charleston Running Club, last June to help coordinate and promote the local event.

"I got involved after they explained to me what A-T is and what Tim Borland was trying to accomplish," recalls Moore. "Being a longtime runner myself, I told them that I was all in."

Both Moore and Turner will be among a limited number of local runners who will accompany Borland.

Most are asked to donate money to the cause. After the run, a post-run reception will be held at 5 p.m. Wednesday at Dunleavy's Pub on Sullivan's Island. People are asked to donate $25.

Borland, interviewed on the phone before his run in Louisville, Ky., on Oct. 15, says he's feeling good and expects to be able to finish the feat.

Inspiration alone would fuel the effort.

"We're meeting kids with A-T and their family every day," says Borland, who is traveling with his wife and two children. "They continue to inspire us."

Borland says the effort was the culmination of two things in his life: a spiritual drive to have more purpose and his family's friendship with the Achilles family of California. Sixteen-year-old daughter Cathryn Achilles has A-T.

"For a couple of years, I've been feeling a sense of longing. Something was missing in my life. I felt like all the time I spent running had purpose other than winning medals and that God had a plan and a purpose for my life," says Borland. "Through a lot of prayer and seeking, things started to come together."

He is succeeding in garnering unprecedented attention for A-T. He already has been featured in USA Today and major dailies in Los Angeles, Chicago and Detroit.

ABC's "Good Morning America" was scheduled to have him featured last Saturday.