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!!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.