When Park and Carly were diagnosed, at birth, with Cystic Fibrosis, my husband and I had no previous knowledge or experience with this disease. We were both filled with shock and fear regarding what their lives might look like. But, this is where our journey of education and determination began to find a cure for CF. The medial age of survival was 27.
Each and every day was filled with therapy vest and nebulizer treatments and taking roughly 30 pills just to maintain their health. This rigorous schedule included a fairly new nebulized medication called Pulmozyme. I was grateful for the research and clinical studies that produced such an important medication for my children. Although it helped their lungs it certainly was not enough to keep infections at bay.
Park would take oral medications to help combat infections when they arose but Carly would be hospitalized several times a year for a 14 day course of treatment to clear the infections. Constant infections damage the lungs over time and I was determined to stop this progress. I knew the most impactful actions we could take would be to raise money to fund research and to have Park and Carly participate in clinical trials.
When the opportunity to participate in the ground breaking Kalydeco study began, we were asked to join. We knew this was specifically intended for CF patients with a certain genetic marker, G551D, which Park and Carly do not have. I assured my children, “this will be the foundation upon which your life saving medication will be built.” And it was......
After participating in two more studies that resulted in FDA approved medications (Symdeko and Orkambi), Park and Carly had college in mind.
Today, Park and Carly are on Trikafta, the newest breakthrough therapy drug for Cystic Fibrosis (by the way, one of the three medications that make up Trikafta is Kalydeco!) The miraculous changes in Park and Carly’s daily life is incredible. The daily non-stop cough that haunted them is gone. Neither Park nor Carly have had a lung infection that required oral or IV antibiotics which means NO HOSPITALIZATIONS! This in turn means living life to its fullest. They both have maintained normal and stabilized lung functions and their overall health has improved.
Trifafta is a life changer! Today, Park is finishing up his Mechanical Engineering degree while enjoying bartending and serving at a favorite local brewery. Carly is now a compassionate ICU nurse with much experience to pull from. They both have so much hope for their future.
I’ve kept this mantra from the beginning of our CF journey to find a cure....” At any given moment you have the power to say this is NOT how the story is going to end”.... and so we continue to work... UNTIL IT’S DONE!
Thank you to all who have helped fund vital research.
Hope to see you at the Fort Wayne Festiv-ALE!