Kylie is a spunky, fun loving 5th grader this year! We can't believe how quickly she is growing up! This last year has been a tougher one for Kylie. She was admitted at the end of the summer for a 2 week tune-up of IV antibiotics. Kylie continues to do her vest treatment twice a day and is currently on anywhere from 1-6 nebulizer treatments a day. She is also being treated for asthma. Kylie has chronic psuedomonas and staph that she continues to culture in her lungs. Her lung function has dropped slightly and sometimes she has to work extra hard to keep up in physical activities. Kylie has to learn her limits and know when it's time to take a break from running around too much. Kylie enjoys staying busy with acting through YPAC. She has been in Annie, Alice in Wonderland, Frozen Jr., and her current production is Seussical. She loves singing all day long, especially to help pass the time during her treatments :)
In case you haven't heard the great news yet, a new medication called Trikafta has been approved for 90% of people with CF!! This is a game-changer for Kylie! It is supposed to drastically improve the lives of those with CF! We are hoping to get her on this medication as soon as it is approved for her age group!
Unfortunately, this is not a cure. We continue to fundraise for the 10% of people with CF who do not qualify for Trikafta, including Kylie's good friend and neighbor, Nala. We also will not stop until we find a cure
We want to thank all of our family and friends for supporting team Kylie's Krew over the years. We would love for you to join our team and walk with us on May 16th at the Naperville River Walk.
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.