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 13 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 the same treatments as Aubree and takes them like a champ. Well, most of the time!
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.
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.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.