Our newborn baby girl, Adie, was 4 weeks old we received a call from her pediatrician to inform us to expect a call from the CF coordinator at Texas Children's Hospital.Adie’s newborn screening showed signs of Cystic Fibrosis (CF), a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine.
When the coordinator called, she had talked to me about CF the symptoms and treatments.We made an appointment for Adie a few days later with a team of Doctors and professionals with the CF group at Texas Children’s to further understand the disease and begin her treatments. At that time, we didn't know what to think, how to feel or really what was going to happen with our baby girl. Right then and there, John and I knew our lives had just changed and we were terrified!
May 5th was the day we met our wonderful CF Team at Texas Children’s, learned more about the disease and started treatments to help Adie gain weight! We knew we had a long road ahead, but we had our friends and family for support.
At 8 weeks old, Adie was admitted to Texas Children's because she had contracted pneumonia. Seeing Adie hooked up to an IV and Oxygen scared me to death. I couldn't believe what was happening. Our newborn was in the hospital and there was nothing John nor I could do. We were helpless and scared! Thankfully, with the amazing staff of nurses and doctors we were able to go home after 7 days.
It took months, but Adie has recovered from pneumonia fully.We are very careful who she is around and where we go. We have kept our four-year-old, Kinsley, out of pre-school in case she was to contract any sort of illness in order to protect Adie from getting sick. For someone without CF, a cold last a few days but for Adie it can turn into a month or longer or worse it could lead to an admission to the hospital.
To keep her healthy, we give her enzymes before eating and treatments twice a day! Often, we increase treatments when she isn't feeling well. We see her CF Doctor and staff at least once a month to help manage her weight and check for bacteria.This is something Adie will deal with for the rest of her life!
It’s very important to us to be very active in learning about CF and to participate in events like Great Strides! We would love for you to come walk with us, make a donation or even share our story. We are Adie’s Avengers and we hope one day CF will stand for Cure Found!!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.