March 12, 2017
BENEFITING: CYSTIC FIBROSIS FOUNDATION
ORGANIZER: CYSTIC FIBROSIS FOUNDATION
EVENT: Pittsburgh Marathon 2017
EVENT DATE: May 07, 2017
Cystic Fibrosis is a condition that personally affects my family. My 10 Year old cousin Aubrie has Cystic Fibrosis. She was disgonsed shortly after birth.
9 daily medications one of those is Creon. She takes 48/day, that's 1440/month for one medication alone. 2 inhalers, 2 nebulizer medicines. She does 4 vest treatments/day, each treatment lasts 30 minues, the vest "shakes" her to loosen the sticky mucus in her lungs so she can cough it out. "Sticky Mucus" is a major issue for CF patients, the mucus is like stepping on gum and cannot get it off of your shoe.
Aubrie has undergone 3 surgeries since birth, including a surgery for a permenant feeding tube. The feeding tube runs for 10 hours everynight for extra nutrition. Most CF patients have a hard time gaining weight and low weight affects their lung function.
Aubrie has participated in 2 research studies;
Sodium Chloride which is a nebulizer medication
Relizorb which is an enzyme for her feeding tube
Aubrie is a smart, beautiful, talented young lady! She is in 4th grade. Her favorite subject is Science! When she is not at school she loves to draw, hang out with friends and mimick animal sounds. In the summer of 2013 Aubrie enjoyed a Make-A-Wish trip to Discovery Cove in Florida to swim with dolphins.
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). 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 and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Learn more about Cystic Fibrosis and our chapter:www.cff.org/wpa