Mackenzie was born April 29th 2019. I had a healthy pregnancy and we were so excited to meet her! After a complicated delivery, we thought everything was fine. At 48 hours old, the delivering hospital discovered that she had a bowel blockage. They were not staffed to handle this and she was airlifted to Nemours Childrens Hospital in Orlando. She underwent surgery the next morning. Seeing our brand new baby like that was the hardest thing I have had to do as a parent, especially because we weren’t prepared for it.
After the surgery, we were told the type of blockage was called Meconium Ileus and 80% of babies born with this particular blockage also have cystic fibrosis. We clung to that 20% for days until when she was a week old, her bloodwork came back positive for CF.
Cystic Fibrosis is a genetic disease that effects every epithelial cell in the body, these cells excrete thick sticky mucus, which her bowels were full of. Because of CF, she is pancreatic insuffient as well which means she cannot naturally digest fats in her diet. We were devastated for our little girl and what this means for her future. There is currently no cure for CF.
After spending a month in the NICU, we went home to our other children and our new life of having a medically needy child. Something neither Trey or myself thought we would experience. With monthly CF Clinic appointments, Synagis injections, daily chest therapy and dozens of pills (digestive enzymes) every day, and even with a recent setback and another helicopter transfer to Orlando she doesn’t bat an eye, she has shown us what resilience truly is.
Kenzie is a genuinely happy baby and she exudes joy. She has captured the hearts of everyone who meets her. When I look into her eyes, I just see something different about her… something magical. She is a truly a gift from God. We are forever part of the cystic fibrosis community and we will fight for a cure for as long as we live. The funds we raise go directly to the cystic fibrosis foundation who is currently working on finding that cure. Right now, there have been some huge advancements in treatments that are giving us hope for her future and those treatments and drugs are from fundraisers like the Great Strides walk. Our team Kenzies Crusaders has a huge fundraising goal and We cannot do this without the help of our amazing friends and family. We hope that you have it in your heart to help us reach this goal!! We are in it until CF stands for CURE FOUND!
Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease. We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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.