FORT BENNING, GA - Two-year-old Ava Wilson has blonde hair and hazel eyes. She likes splashing around in the water, playing pat-a-cake, watching Baby Einstein and other activities children her age enjoy, but Ava has a challenge that most kids her age don't. One year ago, she was diagnosed with mitochondrial disease.

According to www.umdf.org, mitochondrial disease affects the body's ability to create energy. As a result, weakness, poor motor control and inability to gain weight are common.

Before Ava received the diagnosis, her family had never heard of the disease.

"Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10 - basically one in 3,000 births," said Ava's grandmother, Gail LaFramboise, who retired from Fort Benning schools this year.

"We knew something was wrong early on because (Ava) wouldn't eat very well. She refused nourishment," LaFramboise said. "The diagnosis they (initially) gave was failure to thrive. In her first year of life, she was in the hospital five times.

"If you saw Ava, you would think she was this perfectly normal little girl. She's just a little over two and a half now and gives the appearance of a 1-year-old. She's not walking and not talking and is fed with a feeding tube. But she is one happy, smiling, laughing, socially interactive child who is a joy to be around."

Since her retirement, LaFramboise is working to raise awareness in the tricommunity about mitochondrial disease. She hopes to start a local United Mitochondrial Disease Foundation group, she said, to provide support to those affected by the disease and to supply an avenue for resource information and fundraising. The only UMDF chapter currently in Georgia is in Atlanta.

Chey Wilson, Ava's dad, said a support group would be helpful.

Members could take turns visiting the Atlanta meetings and work to find a way to offset medical costs, many of which aren't covered by insurance, he said.

"There are a lot of expenses involved, and there's just a lot of help that's needed. It would be nice just to share ideas," Wilson said. "Ava's at the point where she needs therapy daily, especially if we want her to be walking and talking in time for kindergarten."

National Mitochondrial Disease Awareness Week is Sept. 20-26. The Atlanta UMDF chapter will help spread awareness throughout the month with activities to raise money for treatment and cure research. Events include a walk, Braves game, and a music show.

The Atlanta chapter has around 100 families, LaFramboise said, but a local support group could connect families in the Chattahoochee Valley area who struggle with this disease and possibly even affect legislation to promote researching a cure.

"I know when we went to Atlanta we gained so much information from people who had been going down this road now for years," she said. "As a local group, we could support each other in terms of sharing experiences and talking to others who are on this same journey. It would be an excellent way to make a difference, give people hope and be a part of a larger effort to find treatments and ultimately a cure for mitochondrial disease."

"We have hope that one day she will be able to perform on average with her age group," Wilson said. "That's probably a long way down the road, but we are optimistic that will one day happen."

For more information about mitochondrial disease or UMDF events, visit www.umdf.org. To promote awareness or be involved in a local support group, call LaFramboise at 706-888-4245 or e-mail her at gwbirdie@aol.com.