There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. Cystic fibrosis (CF) is a genetic disorder that affects mostly the lungs but also the pancreas, liver, kidneys and intestines. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections.
I found out I was a CF carrier 8 years ago. When my daughter Ashlee found out she was pregnant, I had her get tested to see if she was a carrier and she was. What are the chances that Aubree and Colbee's dad would be a carrier too?
Well, on April 24, 2015 my beautiful tiny little granddaughter was born. Her name is Aubree. When she was one week old we found out she had CF. We were devastated, scared, angry, worried and clueless as to what this meant. Aubree immediately started on enzymes to help her pancreas digest her food. She needs these enzyme pills every time she eats for the rest of her life. She recently had a feeding tube put in to help her gain weight.
She has chest PT 2 times a day. Chest physical therapy (CPT or Chest PT) is an airway clearance technique (ACT) to drain the lungs, and may include percussion (clapping), vibration, deep breathing and huffing or coughing. At first she didn't mind the percussions on her back but as she is getting older she doesn't have much patience for it! She'd rather be playing on the floor.
Aubree is the cutest, sweetest baby you've ever seen. She has changed the lives of many people. I couldn't imagine my life without her.
Then, on November 3, 2017 my grandson Colbee was born. Unfortunetly, he was born with CF as well. He has the most contagious smile! He has many of the same treatments as Aubree and takes them like a champ. His weight gain has been really good. He loves his bottles.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to Aubree, Colbee and the many other people living with cystic fibrosis. Will you join A&C Breathe Team? Support me by making a donation to my Great Strides fundraising campaign today! Better yet, join my team and help raise money for a cure!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.