When Chris and I found out we were having a baby girl, we went back and forth on names. From the beginning, Chris was pretty set on the name Audrey. After looking up the meaning, I too decided that I wanted our daughter named after "noble strength". At the time, we had no idea how much signficance that name would hold. From the first two weeks of Audrey's life in the NICU, to using supplemental oxygen for nearly four months, and now a diagnosis of Cystic Fibrosis (CF) our little one has proved time and time again that she is of noble strength.
She continues to prove her fighting sprit as she adjusts to life with CF. From the outside looking in, CF can appear decievingly simple. Audrey looks like a normal child with no visible health issues. However internally, her body is under attack because she cannot process salt. This means that her body creates a build up of thick, sticky mucus in her lungs and digestive system. She will have increased difficulty breathing over time and have to endure hours of lung treatments to rid her body of the mucus. Additionally because the mucus affects her pancreas, she will have difficuly gaining weight. She currently has to take 20-40 pills a day containing digestive enzymes to ensure that her body properly absorbs nutrients. She is also more prone to infections and has to see doctors frequently to ensure that she's growing appropriately.
For our family, the diagnosis of CF was intially devastating. We feared for Audrey, what she would have to endure to be healthy, and of course the unknown. Therre are a lot of scary statistcs out there, including that the average life expectancy for a person with CF is just 44 years. After the initial shock of the diagnosis, we have decided that the only course of action is to live life to the fullest and get involved with the solution. That's where the CF Foundation comes into play. This nonprofit started as a grassroots movement by some parents of CF children in the 1950's. Over the past seventy years, the foundation has advocated, supported, and encouraged families and patients thriving with CF. Most notably, the foundation's tenacity and financial support spawned an approval of the breakthrough drug, Trikafta. While Trikafta is not a cure, it does improve lung function by up to 14 percent. This equates to decades added to Audrey's life and decades for 90% of the CF population.
There's still work to be done and we hope you'll support our awesome, amazing, astonishing, awe-inspiring Audrey in her fight and hope for more tomorrows. There's no doubt that she's Worthey of a cure.
To support Audrey, just click on the "Join This Team" button. From there, you can join our team for the Great Strides Walk or simply make a donation. Thanks for supporting our girl!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.