5K walk benefits rare disorder

Published 9:47 am Tuesday, March 23, 2010

Shirley McAfee doesn’t want others to spend as much time in hospitals as she has, watching her daughter struggle with a rare genetic disorder. The Thorsby teacher and Chilton County resident fights a seemingly never-ending battle against Tuberous Sclerosis Complex, the disease with which her daughter Alicia, 40, was diagnosed years ago.

She said the last year is been relatively tough for Alicia and the family with the disease spreading into her kidneys. She is bedridden and fed through a tube. She has blood clots in both of her legs. The tumors on her body sometimes rupture unless doctors catch them before they do.

They spend tireless days and nights in hospitals, draining them physically and emotionally. Last December marked Alicia’s last hospitalization, McAfee, who teaches special education at Thorsby High School, said.

“Thank God for that,” she said. “Our journey has been long and hard.”

McAfee will participate in “Step Forward to Cure Tuberous Sclerosis Walk” on April 10 at starting at 9 a.m. in Mountain Brook. It will begin at the field directly across from Emmet O’Neal Library in Crestline Village. Registration begins at 8 a.m.

According to the Tuberous Sclerosis Alliance’s Web site, Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.

It often affects people severely while others are mildly affected enough to where it sometimes goes undiagnosed. Donna’s case is severe.

People will the disorder often develop epilepsy, autism and learning and behavioral problems. At this time, there is no cure.

McAfee said the chairman of the Alabama TSC Alliance recently returned from a Washington D.C. conference to lobby for $15 million in funds from the federal government, more specifically the department of defense. Legislators have yet to sign off on the funding, and McAfee said members of the regional alliance are still pounding on their doors until they do. Last year, they received $6 million.

“Our researchers think we’re close to finding a cure,” she said. “They’ve located which genes are affected. They say if we find the cure, there’s a possibility we can unlock cancer, diabetes and autism, too.”

McAfee forever stresses awareness. The more people know about it, the greater the potential to cure the disorder. So many people, including doctors, know little or nothing about TSC, so she does her best to spread the word.

“Patients with the symptoms used to go to doctors, and they didn’t know what to do with them,” she said. “One in 6,000 babies is born with it. There could be people who have it and don’t even know it.”

In mild cases, patients are able to live healthy lives.

There will be a silent auction at the walk as well as a performance by the Mountain Brook Jazz Ensemble in the morning. The owners of Camp Mac on Mount Cheaha have a child with TSC and are donating cinnamon rolls for breakfast.

McAfee said people can register for a chance to eat lunch with the Alabama governor’s wife Patsy Riley. Bids start at $100.

Last year’s walk made approximately between $60,000-70,000. The TS Alliance chairman is also making several television appearance to promote the event and raise awareness on TSC.

For more information on the walk, contact Carole Pitard at (205) 968-6670 or ccpitard@yahoo.com.