Mom to run half marathon to raise money, awareness for cystic fibrosis

The Brantley family is seen in this photo. Pictured, back row from left, are Matthew, 21, and Kelli, 19; front row from left, are Stephanie; Kristen, 14; and Todd. Stephanie is raising money for cystic fibrosis by asking people to sign up to run the Augusta half marathon. Submitted photo.

Stephanie Brantley has run a lot of races for the fun of it in her life, but when she runs her next half marathon in Augusta next month she'll be running for a reason.

Brantley, who lives in Aiken, has three children - Matthew, 21; Kelli, 19, and Kristen, 14 - all who were diagnosed with cystic fibrosis, a life-threatening hereditary disease that causes thick mucus to build in the lungs, digestive tract and other areas of the body.

The disease affects about 30,000 people in the United States and has a 25 percent chance of being passed on to the children of two carriers, which Stephanie and her husband, Todd, both discovered they are.

"We hit it three times," Stephanie said.

Matthew and Kelli were diagnosed with cystic fibrosis at ages 3 and 15 months, respectively. Later, routine testing for newborns became the norm, and Kristen was diagnosed at birth.

The diagnoses meant the family had a lot to get used to, and preventive treatments became part of their routine.

Cystic fibrosis is commonly characterized by difficulty gaining or maintaining weight due to malabsorption of nutrients, excessive coughing and shortness of breath and sinus pain.

The life expectancy for a cystic fibrosis patient was 10 years old in the early 1960s, but now the average is 37 years old, according to the National Institutes for Health.

The Brantleys administered inhalant medications and enzymes and did chest percussions for an hour twice per child per day, essentially beating on the children's chest and back area to prevent illnesses like pneumonia.

Stephanie said the family focused on staying positive.

"We didn't make it a big deal, and, because all three of them had to do these things, I think it made it a little bit easier to accept. If they had another sibling that didn't have to do those things, I think they would sit there and compare. All three had to do it, and it was just something they did," Stephanie said.

But sometimes, things got extra tough when one of the three landed in the hospital.

A typical hospital stay for a cystic fibrosis patient ranges from 11 to 14 days with IV antibiotics and aggressive treatments, Stephanie said.

While Matthew was never hospitalized, Kelli and Kristen went to what is now Georgia Health Sciences Medical Center close to 10 times between the two of them, and Stephanie said the hospital was a haven for her family during those difficult times.

On Feb. 26, Stephanie will be the Augusta half marathon's first charity affiliate, hoping to raise $10,000 for the Georgia Health Sciences University Cystic Fibrosis Center and the Cystic Fibrosis Foundation.

"Last year, I decided I wanted to run for a reason. I've never done that before. I've always run for the fun of it, and I said 'You know what? If I'm going to run for a reason, I'm going to run for my kids,'" Stephanie said.

Stephanie is hoping to have 50 members of the community register to run the half marathon and raise money individually in whatever way they are able. Through individual fundraising and corporate sponsorship, Stephanie hopes to raise the $10,000.

The money raised will help fund services like direct assistance to patients' families during hospital stays, education materials and meetings for families and research into the development of drugs like kalydeco, that is slated for FDA approval this spring.

Stephanie decided to do something to benefit the two groups because of the personalized care that they provide to patients like her children.

"It's different with each of them," Stephanie said, adding that cystic fibrosis symptoms are not always apparent, and her kids exhibited them differently. "What's so great about GHSU is the doctors never looked at one and said 'OK, we can treat this one the same way because they are siblings.' It doesn't work that way at all. Each one is different."

Matthew is now a chemical engineering major at the University of South Carolina in Columbia and is part of Savannah River Nuclear Solutions' co-op program. Kelli is pursuing a degree as a certified nursing assistant at Aiken Technical College, and Kristen is in ninth grade at South Aiken Baptist Christian School.

All three will be there to support Stephanie as she runs the half marathon.

"There are many other patients who have had lung transplants and faced darker roads than we have," Stephanie said. "These stories keep you really thankful for where you are and really grateful to the presence of God in our lives."

Stephanie's goal is to raise $10,000 for the 13.1-mile run on Feb. 26. The half marathon will begin and end at Enterprise Mill on Greene Street in downtown Augusta at 8 a.m.

For more information, contact Stephanie Brantley at miles4cfaugusta@yahoo.com or 426-7947.

Anna Dolianitis is a reporter for the Aiken Standard. She covers the Department of Energy's Savannah River Site, as well as court and legal matters affecting Aiken County. She has been with the Aiken Standard since August 2010.