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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.