Friends of Team Katelyn,
As many of you know, our daughter Katelyn has Cystic Fibrosis. On Saturday, May 21st we will be walking in the Charlotte Great Strides walk event. This year is Team Katelyn’s 10th year walking and invite you to join us for this annual event.
We are also aware that this past year has been challenging on many levels. This year we are asking for support in a couple of different ways. We ask that you perform an act of kindness in honor of Katelyn and walk with us on May 21st to honor all those with Cystic Fibrosis. If you can support by making a donation to Team Katelyn, we would greatly appreciate it.
This past year Katelyn started a new journey by taking Trikafta on top of her other medications and treatments. Trikafta was recently approved for children ages 6-11 and it targets the CFTR modulators (F508del) and is "known to have a transformative effect on the health and well-being of many people with CF" This is a complete game-changer and when we ask you to donate and walk with us each year this is why. Money is not donated to simply "raise awareness" it is donated to help change the lives of those with Cystic Fibrosis. While this is not a cure for CF it is a giant leap towards that goal.
What is Cystic Fibrosis you ask? Cystic Fibrosis is a genetic disease affecting approximately 30,000 children and adults in the United States. In the early 1950’s, children born with CF died early in childhood. Today, thanks to improved medical treatments, people with CF are living long and relatively normal lives. Cystic Fibrosis affects each individual differently and therefore there is not one specific definition for the symptoms or how each person will be affected by the disease. People with CF produce abnormally thick, sticky mucus, which can clog the lungs and lead to recurring lung and sinus infections. Due to this thick mucus, many with CF also have pancreatic involvement where the digestive enzymes needed to absorb nutrients in food cannot get out of the pancreas.
We have a daily routine that Katelyn does in order to treat these symptoms of Cystic Fibrosis. This routine includes daily medication (about 20 pills a day), 2 vest treatments that squeeze and vibrates her chest with a nebulizer medication, plus additional medications and treatments when she is sick. These treatments and the medication Katelyn takes are all because of the research the Cystic Fibrosis Foundation has done and continues to do to help people like Katelyn lead as close to normal lives as possible.
We humbly thank you for your support. Our wish is that one day, CF stands for “Cure Found”. Please help us add more tomorrow for those with CF by making a donation to Team Katelyn by clicking on the donate to me button at the top of this page
Jean, Preston, and Katelyn Hess