When you have a child diagnosed with cystic fibrosis, you gain a whole new vocabulary. First, we learned pancreatic insufficiency. The duct that allows enzymes to empty into the intestines gets blocked with sticky mucus. Without those enzymes, Eli can’t absorb fat or protein. Luckly, oral enzymes have been available since the 40s. Eli takes 12 pills everyday to absorb the nutrients his body needs to grow.
Next, chest percussion therapy or CPT. The use of percussion (clapping on the chest and/or back) to loosen the thick, sticky mucus in the lungs so it can be removed by coughing. Unclogging the airways is key to keeping lungs healthy. We spent the first year of Eli’s life clapping on his chest. His first birthday brought his first vest that connects to an air compressor to provide the percussion. Eli does 2 to 4 treatments everyday for 30 minutes per treatment.
This year the new vocabulary word is Bronchiectasis. It is a condition where the large airways of your lungs are permanently damaged, widened, and thickened. These damaged air passages allow bacteria and mucus to build up and pool in your lungs. Despite the fact that we never skip an appointment, never skip a treatment, cystic fibrosis is still causing damage to Eli’s lungs. Because of this we will march again this year. We will keep raising awareness, sharing our story and raising money till CF stands 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.