We are walking for Mackenna. Shelby works with her Mom at Wondermakers Travel and calls her a dear friend. Mackenna was born with Cystic Fibrosis and it is an honor to celebrate her wins and raise awareness by walking for her each year!

Cystic Fibrosis (CF for short) is a rare genetic disorder that causes the body to produce thick, sticky mucus that can damage vital organs, particularly the lungs and digestive system, pancreas, and liver, leading to breathing and digestive problems, and CF related Diabetes. In 2012 the average life span of someone with CF was only 24 years old. 

Mackenna has had a particularly rough go at it. At 24 hours old she had to have emergency bowel surgery. Most of her small intestines had started dilating and died while in the womb.  

Her first car ride was an ambulance to rush her to surgery, her first bath given by nurses, her first feeding was intravenous via PICC line. At a 4 weeks old her Mom, Dad, and NICU nurses had to learn how to feed her enzymes and apple sauce to help her break down and absorb nutrients. Something a lot of nurses didn’t even have experience with! 

She has had several hospitalizations and surgeries due to digestive issues and both lungs collapse due to bacteria colonies that had set up camp in her lungs while in the NICU. 

But thanks to many fund raisers like this one, Mackenna at age 6 was able to gain access to the first of its kind- a modulator that fixed what is broken within the CF gene. (This medicine basically tells the car how to drive on a broken highway to deliver the salt that her body needs to function properly.) Just with this first modulator Mackenna was able to have her G-Tube removed. She was no longer a failure to thrive and could maintain weight, and absorb nutrients like you and me! 

Fast forward to her turning 10.  She then gained access to a newer and better modulator- TriKafta this one was a total game changer and it has allowed her to go from taking 45 pills a day, multiple breathing treatments, and therapies to only needing 10. She also stopped culturing all harmful lung bacteria’s that had set up camp in her lungs since her NICU stay! 

They are truly living in a new age of medical care! Her parents are so thankful for fundraisers like this that makes it possible.

Sadly these medicine are not yet available for all CFers. More work is still being done and better modulators are being developed to further improve their quality of care. If all my friends could just consider donating even $5 that would make a HUGE difference in the life of about 30,000 Americans that have this disease.