As many of you know, our sweet Kylie was diagnosed with cystic fibrosis at 15 days old. Cystic fibrosis (CF) is a chronic, fataldisease that damages the lungs and digestive system. Cystic fibrosis shortens the lives of those who have it. Living with a chronic illness is very hard. Dailey treatments, medications, and many doctor visits. There is no cure for CF.
Kylie is now 3 years old, and is doing remarkably well fighting cystic fibrosis. She had no hospital stays this year, and her lung function is @ 100%. All thanks to the dozen of pills, 3 breathing treatments, and 30 mins of vest airway clearance she does each day. She has now started taking the drug Orkambi. Orkambi is used to counter act the underlying genetic defect that causes the disease, as opposed to treating symptoms. It may help to improve breathing, and reduce the risk of lung infections. Kylie is a happy, energetic, fun loving little girl. Its hard to imagine 60 years ago a child like Kylie was not expected to live until the age of 5. This is sobering thought. Thankfully, support for the Cystic Fibrosis Foundation has led to medications, and treatments that allow people with CF to live longer, fuller lives.
Now for our beautiful Madison, she was born on March 25, 2018, and was diagnosed with cystic fibrosis. She was able to begin treatments, and enzymes right away. Madison takes 3 Creon pills (enzymes), with every bottle or meal she eats, she takes salt supplements, airway clearance therapy, and breathing treatments daily, She is a very calm, happy baby, who loves to sit back and watch everyone around her, especially Kylie, and their dog Bentley. She has had no hospital stays, which we a very thankful for. We changed our team name from Breathe & Believe for Kylie to Team Double Trouble, so that both girls would be included in our fight.
We hope you will join our family on May 19th as we walk for Kylie, Madison, and all those fighting this life threatening disease. If you are unable to walk but would still like to make an impact, please consider a donation to the Cystic Fibrosis Foundation that will add tomorrows for Kylie, Madison, and so many others fighting this same battle.
Research into a cure is not funded by the government, as it is with some genetic diseases. your generous gift will be used effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care, and education. Your gift is 100% tax deductible.
Join our team and help add tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for them. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. We will not rest until all those with cystic fibrosis have a cure. The time is now. Together, we can conquer this disease.
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.