COVINGTON - Kendra Losch was in her first trimester of pregnancy when she learned she is a carrier for a rare gene that causes cystic fibrosis.
Testing on her husband, Torry, revealed he is a carrier, too.
That meant their child had a 25 percent chance of inheriting both genes and having the disease.
Electing not to have amniocentesis to find out for sure due to the high miscarriage rate that accompanies the procedure, the couple had to wait until their baby girl, Torianna, was three weeks old to learn that she did, in fact, have the disease.
That was in October. Now 5 months old, Torianna has trouble gaining weight and digesting food and has had numerous colds that easily turn into infections.
She has to take medication before every feeding to help her absorb nutrients and breathing treatments every day to rid her lungs of excessive mucus.
Watching their baby deal with a fatal disease is something the Losches never imagined they'd have to face.
"No one in our family has ever had the disease, so we had no idea we were carriers," Kendra Losch said.
Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system. It is caused by a defective gene that causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
"When my husband and I found out that our daughter had this disease, we were emotionally devastated. We felt such an overwhelming feeling of helplessness, and we knew that no matter what we did, we could not make this disease go away," Losch said.
During the family's first visit to the Children's Cystic Fibrosis Center in Atlanta, they saw a flier advertising the ING Georgia Marathon, and a team called 65 Roses that would be running to raise money for the Cystic Fibrosis Foundation.
"Torry looked at me and said, 'This is what I can do for Torianna,'" Losch said.
Torry Losch went home and registered for the marathon right away. The big day is this Sunday, where he and about 100 other runners with 65 Roses will take to the streets of Atlanta in hopes of making tomorrow brighter for all who suffer from the rare disease.
The marathon is open to anyone and is not specifically intended to raise money for any particular cause. But 65 Roses team members are asking for donations from friends, family and the general public, with 100 percent of proceeds donated to the Cystic Fibrosis Foundation and the Cystic Fibrosis Reaching Out Foundation to fund research for a cure and treatments as well as help patients purchase medication.
Incidentally, the team takes its name from a 4-year-old boy who couldn't pronounce the name of his illness - Cystic Fibrosis - and instead called it "65 roses." That was in 1965, and since then, the Cystic Fibrosis Foundation has affectionately used the name in its fundraising efforts.
About 30,000 people in the country and approximately 800 in Georgia have cystic fibrosis. Torianna is the only sufferer that has been identified in Newton County by the Cystic Fibrosis Foundation.
The disease is so rare, it often doesn't get as much publicity as other illnesses, Losch said, adding that she hopes the marathon will raise awareness as well as money.
Great strides have been made in treatment even during the last 15 years. In the early '90s, the median projected life span for sufferers was 17 years. Now, it's almost 37 years. In 1955, children with the disease weren't expected to live to attend elementary school.
Just three years ago, when Losch gave birth to her first daughter, who does not have the disease, newborns were not tested for the disease in Georgia, she said.
It's her hope that more advances will be made so that Torianna will live to see the day a cure is discovered.
"When it's your child, you want her to be healthy and have a long life and do things other people get to do," she said.
As she gets older, Torianna will develop a persistent cough and will have to continue with medication and the breathing treatments and subsist on a high-protein, high-fat diet to get proper nutrition.
"This will be a disease she'll have to live with the rest of her life. She'll have to take good care of herself," Losch said.
And one day, Losch hopes, Torianna can live free of the bondage of the disease.
"Today cystic fibrosis is an incurable disease but through donations, we can help fund research to find a cure so that one day CF will stand for 'cure found,'" she said.
To make a donation to team 65 Roses, visit www.milesforcysticfibrosis.org and click on the Atlanta link. Donations can also be made by mail. Make checks payable to Miles for Cystic Fibrosis; c/o Sue Stein; 4055 Vicksburg Drive; Lawrenceville, GA 3004.
The Cystic Fibrosis Foundation also takes donations year round. To learn more, visit www.cff.org or call, toll free, 1-800-344-4823.
Crystal Tatum can be reached at firstname.lastname@example.org.
SideBar: At a glance
Cystic fibrosis is a genetic disease. People inherit it from their parents. To inherit cystic fibrosis, a person must inherit two copies of the defective CF gene - one copy from each parent. If both parents are carriers of the CF gene, their child will have a 25 percent chance of inheriting both defective copies and having cystic fibrosis; a 50 percent chance of inheriting one defective copy and being a carrier; and a 25 percent chance of not having CF or carrying the gene.