Cystic Fibrosis
Ella Kate Anderson made headlines in her hometown of Hartselle in 2013 when at just four years old, she donated over 11 inches of her hair to Locks of Love. She did so in honor of a friend who was battling leukemia. The compassion of a child is always noteworthy, but this gesture was even more notable because Ella Kate is fighting her own battle with Cystic fibrosis (CF). “We want her to always remember how much time and effort people put into fundraising and supporting (a cure for) Cystic fibrosis,” said Ella Kate’s mother, Shannon. “This was just a small way she could give back to her community.” Ella Kate was born April 23, 2008. Her mother said she was one of the first babies diagnosed with CF through the state of Alabama’s Newborn Screening Program, put into place just before her birth. Her parents, Shannon and Stan, received the call when Ella Kate was three weeks old that the test indicated Ella Kate may have CF. CF is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF. In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients. Each year in the United States about 1,000 new cases of CF are diagnosed each year. The median predicted age of survival for people with CF is in the early 40s. “I remember holding her most of the day praying for God to heal my child, to take away whatever showed up on the test, and to give us strength to take care of her whatever the outcome,” her mother said. “You can imagine, walking into the hospital was overwhelming holding my three week old and not knowing what the future held for her.” A sweat test confirmed the diagnosis. The Andersons went through classes at Children’s of Alabama once a week to be educated about CF. Ella Kate and her family continue to visit Children’s frequently. She has had minor surgeries but has not yet had to stay overnight. Ella Kate is required to do daily treatments to maintain her health and wears an airway clearance vest at least once a day for 30 minutes and uses a nebulizer as well. She takes pancreatic enzymes at each meal to help her absorb the nutrients she needs to thrive. Today Ella Kate lives the active life of any adolescent. She plays basketball and enjoys dancing, riding her bike, swimming and spending time with her family. She loves school and even wants to be a teacher. Shannon said Ella Kate doesn’t know what she’d do without the caring staff at Children’s of Alabama. “The staff at Children’s has been so welcoming to us from our first day to today,” she said. “The Pulmonary staff was supportive, offered as much help as possible, and educated us and our family on all we needed to know to care for our child. We are forever grateful and thankful for Children’s and the wonderful staff who cares for our baby!”
