Moving Forward Full Force

Renee Kopkowski
Publications Manager,
Scottish Rite Children’s Medical Center

1001 Johnson Ferry Road
Atlanta, Georgia  30342-1600

As one little girl’s case demonstrates, Scottish Rite Children’s Medical Center is part of the movement toward a cure for Cystic Fibrosis.

The second she entered the world, everyone knew little Greyce Leake was special. What they didn’t know was just how special her whole family was. Greyce was born six weeks early. By the time she was three days old, her parents, Joye and Zane, found out Greyce had Cystic Fibrosis (CF). They didn’t even know what CF was, but they knew it was something they could overcome.

“Someone at Scottish Rite Children’s Medical Center in Atlanta, Georgia, told us special children are only given to special parents,” said Joye. “I’ve always remembered that. From that point on, we accepted Greyce’s diagnosis, and we’ve done the best we could with it.” CF was not an easy diagnosis to accept. As Joye and Zane did more reading, they found out that the illness, which affects the lungs and gastro-intestinal system, shortens a child’s life expectancy greatly. They knew that Greyce may not be with them for long.

“We will have Greyce for as long as we can, and we’ve made a decision to make sure that her time is spent with us in the best way possible,” said Joye with a reassuring smile. Looking at Greyce today, you can see the decision her parents made after her birth 10 years ago was one they continue to stand by. This happy little girl keeps up with all her friends who don’t have CF. She loves running and playing with her dog and going on camping trips with the rest of her family. Greyce also maintains good grades in school. According to pediatric pulmonolgist Peter Scott, M.D., Greyce’s good health can be attributed to several different things.

“First and foremost, Greyce has a great attitude with this chronic illness, and her entire family helps her stay positive,” said Dr. Scott. “Most importantly, though, they keep up on Greyce’s medication and special nutrition needs, and they’ve worked with us to teach Greyce how to manage her illness.” Experts agree that managing CF is the key to longer, healthier lives for these patients. Daily medicine, nutrition, and breathing therapy treatments help CF patients live comfortably and happily. Scottish Rite Children’s Medical Center’s CF Center spends much time focusing on this type of education for families.

In Greyce’s case, she began seeing pediatric gastroenterologist Edith Pilzer, M.D., and Dr. Scott about two weeks after she was born. Together, these physicians and the multidisciplinary staff at Scottish Rite have managed Greyce’s care her entire life. In doing so, they’ve been able to keep this potentially unhealthy child healthy and, often, out of the hospital.

“Scottish Rite has been there for us, and the experts there have taught us so much,” pointed out Joye. “We work together. They trust what we tell them because we’re with Greyce every day, and they take that information and help us develop the best treatment plan. They also put us in touch with support groups and outside resources so we can continue to get more information.”

It’s more important than ever that CF patients stay educated about their disease to stay healthy. The gene that causes CF has been identified by national researchers and, although a cure could still be a long way off, great steps are being made to find one. Patients who are healthier may have a better chance of being here for that cure.

Scottish Rite Children’s Medical Center is part of the movement toward the cure. As a satellite center of the Medical College of Georgia, the CF Center at Scottish Rite is always on the cutting edge of CF treatments, according to Dr. Scott. The Leakes couldn’t be more comfortable with that knowledge or with Scottish Rite.

“They’re always there for us at Scottish Rite. I study a lot about CF and always have lots of questions for Dr. Pilzer and Dr. Scott. They’re always prepared and supportive of us,” said Joye. “One thing that’s even more comforting for the whole family, especially Greyce, is that most of the nurses at Scottish Rite have been there since Greyce’s first stay. It’s so much easier to see familiar faces of people you know will take good care of your child when you have to visit the hospital.”

Keeping CF patients like Greyce healthy and working toward a cure for all CF sufferers, the CF Center at Scottish Rite helps families like the Leakes enjoy full, satisfying lives.