Sarah Brandt

Hi! My name is Piper Eileen, I am 2-years-old, have a twin brother, Colt Eugene and a big sister, Charlie (4 years). We live with my parents in a small rural town in Idaho, we have lots of farm animals and love spending time together as a family. I also have Cystic Fibrosis (CF). 

My parents found out about my diagnosis through a newborn screening for CF when I was in the NICU with my brother just after we were born. Not even aware that either parent were genetic carriers for CF, this came as quite a shock to my family. Between having 3 little kids under the age of 2 and a new diagnosis that they had no idea how to even comprehend, it is just now that my parents are able to tell my story. 

CF is a progressive, genetic disease that affects the lungs, pancreas, and other organs. It is the result of a genetic mutation that is in charge of regulating the proper flow of water and chloride in and out of cells lining the lungs and other organs. In people with CF this can leave to the buildup of thick, sticky mucus, which can lead to infections in the lungs and damage to the pancreas. It can also lead to problems in other parts of the body. 

Currently, nearly 40,000 people in the United States have CF. With the help of my AMAZING CF Care Team at St. Luke’s Cystic Fibrosis Center of Idaho, my parents have been given the proper education around my condition, treatments and amazing medical advancements. My team consists of a variety of specialists that support medical and nutritional care, therapies to help slow down the progression of lung decline and provide behavioral health to help overcome problems related to my disease. 

I take about 15-20 digestive enzymes (pills)/day during meals to help with digestion so that I can grow and thrive. And as you can see, they are working!  I have been taking these enzymes daily since I was a baby when my parents would put them on a spoon with applesauce before I was even eating solids. I also do chest physical therapy (CPT) aka Airway clearance 2-3 times/day to aid in draining my lungs, and I also do inhaled medication to help thin my mucus and prevent lung damage. This has been quite a learning curve for our family, but I think my brother and sister like it when I do my treatments because we all get to watch a movie together during this time, currently our favorite shows include: Frozen, Frozen II and most recently, Ferdinand on Disney+.  

In 1955 most children with CF did not live long enough to attend elementary school however, today the median age of survival is 53 years. Thankfully, 1 month after my 2nd birthday, the FDA announced that there is a medication called,Trikafta, that is basically revolutionary for my condition. I am planning on starting this medication soon, and am excited to see what happens from here. 

On June 10th, I am going to be doing, Great Strides, a fun event that provides an opportunity for my family and friends to come together to try and make a difference in the lives of people with CF. If you can, please join our team! We would love to walk with you!! If you cannot, we understand, thank you for taking the time to hear a little bit about my story. There is no pressure to make a donation or raise money, but if you feel so inclined all the money raised on this platform will go directly to the Cystic Fibrosis Foundation a non profit organization that has helped discover and develop breakthrough CF therapies. 

My parents just wanted to have you on our team working toward a cure, raising awareness and supporting other little fighters like me! All our love to you, thank you for being one of Piper’s Protectors. 

~Scott, Sarah, Charlie, Colt and Piper Brandt