When Madelyn Flora of Fort Payne, Alabama, was born in May 2012, she seemed healthy, and the difficulties of those first few weeks – fussiness, sleeplessness, no weight gain -- were thought to be normal for a newborn. Soon, however, her parents, Holly Jo and Alex, would learn that those symptoms foretold a serious diagnosis: cystic fibrosis.
As the baby failed to grow and her health began to decline, the Floras were referred to Children’s of Alabama where testing confirmed that Madelyn had cystic fibrosis, a chronic disease that mainly affects the lungs and digestive system.
Right away, Madelyn was seen by members of a multi-disciplinary team of experts who specialize in the care of children with cystic fibrosis at Children’s. "They launched right in to teaching us and Madelyn's grandparents how to take care of her. With the shock of her diagnosis, it was so good for us to immediately be busy learning about her CF and for us to feel like we were helping her," Holly Jo said.
The improvement in Madelyn’s health was immediate. “The medication did miracles,” Holly Jo said. “It was the first time I ever saw her awake and content.”
Today, Madelyn ranks in the 70th percentile in her growth milestones and enjoys dance class and playing soccer which help strengthen her lungs. She takes several daily medications, uses an inhaler and must wear a percussion vest for 30 minutes twice a day to loosen the phlegm in her lungs.
In August of 2014, Madelyn became a big sister when the Floras welcomed baby Derek to their family. “We hoped he didn’t have CF but we tried to prepare ourselves,” Holly Jo said.
Newborn testing confirmed that Derek did indeed have the same strand of cystic fibrosis as his sister, but it affects their bodies differently. Derek has more lung problems, which requires a daily breathing treatment before bedtime as well as chest percussion twice a day. Like his sister, Derek takes enzymes to improve digestion, daily medication and eats a special diet. Despite the disease, Derek ranks in the 98th percentile in development and is, according to Holly Jo, an active little boy.