Welcome to my Page
Welcome to our Cystic Fibrosis Cycle for Life site! This is our family’s 7th year to participate in this ride! We got involved with the Cystic Fibrosis Foundation through this ride in the Fall of 2016 when Abigail was just 5 months old, and had only been diagnosed with CF a few months prior.
Long before the world was talking about social distancing and wearing face masks for protection, those in the CF Community were already aware of those safety practices. At our first CF Cycle for Life, we learned that while outdoor events do allow for more than one person with CF to be present, those individuals should remain at a minimum 6 feet apart to avoid the risk of cross-contamination of dangerous germs and bacteria that are more likely to be trapped in the thick-sticky mucus of the lungs of a person with CF. At rides, Abigail wore a sticker on her back that said “I’m a FIGHTER” to indicate to others that she has Cystic Fibrosis. Others living with CF did the same to give awareness to others of their need for safe distance.
Many of you know our story of how Abigail was diagnosed with Cystic Fibrosis at the age of about 1 month through the newborn screening and then the Sodium Chloride test.
We learned that Cystic Fibrosis is a life-threatening, genetic disease that causes the body to produce thick, sticky mucus and affects both the lungs and the digestive system, and that people living with CF are more susceptible to bacteria and infections getting stuck in their lungs. We also learned the difficult news that over time, these infections cause a decrease in lung function that makes breathing incredibly difficult or impossible.
And yet, despite the difficult news, God was faithful in assuring us that Abigail was "fearfully and wonderfully" made and that He had a plan for her good and His glory!
Abigail still maintains her daily routine of breathing treatments both in the morning and in the evening. Just over a year ago, she got a vest for airway clearance. The vest inflates and the air shakes her torso to loosen any mucus that has gotten stuck in her lungs.
On school days, both of the girls are up by 6:00 a.m. to start her morning treatment which is about 30 minutes long. Her evening treatment included two different medications and takes about an hour.
In many ways, life has returned to normal post-pandemic. Both of the girls are back at school and are involved in more activities than we can keep up with! This year, Abigail is taking piano, dance, gymnastics and she is on a cheer squad! Our busy evenings mean juggling the treatment schedule based on those activities. And while the treatment may happen at a different time each evening, we NEVER SKIP it!
The Cystic Fibrosis Foundation and community has been integral in advocating for Abigail’s health, and are doing incredible work in the area of research! Incredible drugs that treat the root cause of CF, not just the symptoms have been approved for adults and children in recent years. Unfortunately, the extremely rare gene mutations that Abigail has makes her and about 10% of the CF population ineligible for these new modulator drugs. While it can be discouraging that she isn’t able to take drugs that have dramatically improved quality of life for many living with CF, it makes us renew our commitment to finding a CURE FOR ALL!! We are encouraged beyond words when those who already have access to these life-saving drugs also commit that they won’t stop fighting UNTIL IT’S DONE!
For more info about the Cystic Fibrosis Foundation, check out our Team Page.
We would be humbled and grateful if you join us in making a monetary donation to support this mission for Abigail’s life UNTIL IT’S DONE!!