Chloe was diagnosed with Cystic Fibrosis via her newborn blood screening - confirmed at just two weeks of age. Thanks to these blood screenings, we were able to catch her disease so early on and begin treatment immediately.
Chloe is what is known as a "double delta" CF patient - meaning, she has two copies of the f508del gene mutation, the most common form of Cystic Fibrosis. CF is a lung disease primarily, but also impacts other bodily systems. For instance, Chloe is also pancreatic insufficient as a result of her CF. This means she must take enzyme pills with every meal, otherwise, her body will not properly absorb fats and nutrients.
In addition to pills with every meal, Chloe right now does two breathing treatments every day. First, she uses an inhaler, then one to three different nebulizer treatments, depending on what cycle of antibiotics she is currently on. She has to add salt to all her meals, as she sweats out over half of her salt intake. She has three different vitamin supplements - a multivitamin, Vitamin D, and Zinc - that she has to have daily. She also takes a modulator medication twice per day.
Currently, she is taking Orkambi as her modulator, but we are so excited for Chloe to turn two and be able to start taking Trikafta! For Chloe's double delta variant, Trikafta is all but a miracle drug that has helped so many with a f508del mutation all but cure their CF.
Our hope is that Chloe will live a normal, long, healthy and happy life and simply have to take Trikafta daily - but the "what if"s do always loom overhead, which is why your support of Team Chloe and donations to the Cystic Fibrosis Foundation are SO important. These donations go directly to continuing research on life-changing and life-saving medications that will radically change the future of Cystic Fibrosis.
So please, join us - in person, as a virtual walker, and through donations - in making CF stand for Cure Found. Let's Cure It For Chloe and not stop Until It's Done!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.