My Xtreme Hike Story
Hello again, Team Morgan!
It’s that time of year again, with a new school year started and another Cystic Fibrosis Xtreme Hike on the horizon. This year, the hike is back to its pre-Covid roots, and will be the full 20+ mile day hike in late September.
On the CF front, it's been another good year, with research continuing to work towards a cure for all with CF. Morgan is still taking Kalydeco, which has been instrumental in treating the underlying cellular conditions of CF. She also still does her daily breathing treatments and chest physical therapy twice a day when healthy, and we just retired the first “shaky” machine that she received when she was 2 years old. That’s the machine that connects to a vest that shakes her torso to loosen up any sticky mucous in her lungs. When we were replacing her old unit, the customer service representative had us pull up the number of operating hours the old machine had worked, and we were just shy of 3,000 hours. At 30 minutes, twice a day, that equates to over 8 years of treatments, and the equivalent of 125 days of non-stop shaking! We’re so grateful that the medicine and treatment combination seems to be keeping Morgan in great health! And of course, we are so proud of how diligently Morgan works to stay healthy on top of school and sports like swimming and volleyball!
Unfortunately, there are still CF patients for whom no good treatment yet exists. But the CF Foundation continues to fund efforts to find both treatments and a cure. We won't stop hiking and fundraising until there is a treatment for all CF patients, and eventually a cure. Without these efforts, drugs like Kalydeco would not be possible for Morgan.
Thank you so much for reading, and as always, thank you for your continued support. We will keep you posted on our progress and wish you all a wonderful and safe fall.
- Rob, Kristen, Alex and Morgan
PS. For those that aren’t familiar with CF, it is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections and extensive lung damage. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.