A mother of three, Jessica Griffis was bewildered as she watched her voraciously hungry infant Gwyneth eat and eat, and continue to lose weight, month after month.
"We were watching her starve," said the Ooltewah resident. "She cried all the time, I nursed her all the time. She was waking up throughout the night, hungry."
Born 6 pounds, 8 ounces, Gwyneth weighed 15 pounds at her four-month checkup. But at a doctor's appointment two months later, her growth was slowing, and by age 1, Gwyneth weighed only 11 pounds.
The family's doctors in Atlanta suggested that the Griffises were not feeding her properly, Griffis said.
It wasn't until the family moved to Chattanooga last year that they finally got a diagnosis of cystic fibrosis from doctors at T.C. Thompson Children's Hospital, after Gwyneth, now 21/2 years old, was hospitalized for breathing problems.
Cystic fibrosis is caused by a genetic mutation that causes the pancreas to become clogged with excessive mucus. The mucus hinders the organ's ability to secrete digestive enzymes that help the body absorb nutrition from food, according to the Cystic Fibrosis Foundation. The excessive mucus in the body also leads to lung infections and digestive problems.
Gwyneth's diagnosis ended up leading to the discovery in February that older sister Abigail, 6, also has the disease, although her gene mutation -- as well as her symptoms -- are different. Abigail had numerous intestinal blockages as a child, which are related to the cystic fibrosis, Griffis said.
Another sister, Emma, 10, is a carrier of the defective gene but will not show symptoms, like both of her parents.
Having an answer gave some relief to the Griffis family and allowed the girls to get much-needed treatments, including drugs to supplement their digestive enzymes and help clear mucus.
"You never want your child to have something like this in a million years. But it is such a helpless feeling to not have a path, to be watching something happen and as a parent you're doing everything you can and you can't get any answers. ... It was such a relief to have a plan."
Later this month, the Griffises are taking part in the Three Blind Wines fundraiser event at the Loose Cannon Gallery in Chattanooga. It's the second annual wine-tasting event to benefit the Cystic Fibrosis Foundation. Griffis hopes increased awareness will help children get diagnoses quicker than her daughters did.
Cystic fibrosis affects only 30,000 people in the United States, and its symptoms are often confounding.
With relatively few people affected, drug companies have little incentive to pursue research for treatments or a cure for cystic fibrosis, said Leigh Ellington, special-events manager for the Cystic Fibrosis Foundation's Tennessee chapter in Knoxville.
The foundation raises money to support research and has helped fund the development of multiple drugs to help improve life expectancy, which is now 37 for those with the disease, she said.
"Fifty years ago, if a child was diagnosed with cystic fibrosis, the parents were basically told [the child] would not make it to age 5 or enter school," she said. "We have made dramatic improvements. [But] we're not content. We're going to keep going."
Last year Three Blind Wines raised more than $11,000 for cystic fibrosis advocacy, she said.
Now on multiple medications each, Gywneth and Abigail are thriving. On a recent day, they happily rode the carousel in Coolidge Park, then ran off to play in the water fountain.
The Griffis girls still face challenges ahead, but the family is optimistic that funding for the CF Foundation will help bring about better treatments to lengthen life expectancy for their kids and perhaps, eventually, find a cure.
"It gives you hope that in [a few decades] this foundation has been able to do incredible things for these kids," Griffis said.