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March 5, 2014

Athens woman says raising money for cystic fibrosis is ‘mission from God’

ATHENS — Amy Carter has been hung up on at least 50 times in the past week.

She has been telephoning residents in Limestone County in an effort to raise research money in the name of a Hartselle girl — Ella Kate Anderson — who has cystic fibrosis, a genetic disease that affects the lungs and digestive system.

“People think I am some drunk woman,” said Carter, 36, whose cerebral palsy affects her speech. “I just want them to know I’m not a drunk person. This is my mission from God.”

From her wheelchair at Limestone Health Facility, an Athens nursing home, Carter has raised more than $30,000 for CF research and treatment over the past few years.

She does it because no matter how tough she has it, she figures a person with CF has it worse.

“I can’t walk, but they can’t breathe,” she said.

Ask Carter nearly anything about CF, and she can tell you the answer, having studied the disease for many years.

CF is caused by a defective gene and its protein product, which causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food, according to Carter and the CF Foundation. The condition affects about 30,000 children and adults in the United States, and about 70,000 worldwide, she said.

“They have to get hours and hours of breathing treatments and they have to wear a vest that applies pressure to the chest to loosen and thin mucus,” Carter said. “In spite of these treatments, they have an average life expectancy of 37 years — half will make it, half won’t.”

Ella

Carter said she wanted to raise money for Ella, a kindergartner at Crestline Elementary School, because she lives in North Alabama and because “she’s a little firecracker.”

“She is sick but she is lively,” Carter said.

Like most every other preteen in the world, Ella wants to meet singer and teen heartthrob Justin Bieber, Carter said.

In raising money for Team EKA, Carter and others hope researchers will someday find a cure for the disease.

“There is no government funding for CF,” Carter said. “It is an invisible disease. The money people raise is all there is.”

Those who raise money not only want researchers to find a cure, they want the quality of life improved for those with the disease, Carter said.

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