Hello

My first decade of life was a challenge. As a little girl, I never really thought much of my CF. I just thought it was normal to be so sick all the time and spend countless nights in the hospital. I thought it was normal to have a picc-line, be on oxygen, undergo anesthesia every month,  go through various procedures, etc. I did hours of treatments, swallowed 40+ pills, and did chest therapy like it was part of any child’s routine. I was made fun of for coughing, called a smoker, a toothpick, a string bean and other harsh things. I was so sick during the 5th grade that I missed so much school they wanted me to repeat the grade. For lack of better terms, I was a very sick child. 

 

My sister, Molly, also has Cystic Fibrosis. CF can be a lonely world from the isolation since you can never be around anyone with CF because of cross-infection. Unlike most CFer’s, I am lucky enough to have someone I can be with who understands what I am going through, despite these rules. Growing up, we would sit together and watch TV as we did our breathing treatments, would take turns getting out our pills, swam laps in our backyard pool as we coughed up mucus, participated in research studies, went to the doctors together and ate countless calories to gain weight. Molly is rare- her personality is bright, selfless, and very caring. Molly has a very big heart.  She always wants to help people and never puts herself first. She listens and understands. She is someone who I have always looked up to.  At the end of the day, I thank God we have each other, for we are each other's backbones. Molly is my best friend.

 

My parents were the two people who saw the raw, scary moments of my childhood. They saw the life or death moments. They saw the oxygen tank clicking and the machines saying how sick I really was. They heard the doctors' and nurses' uneasy words.  They were the ones who did everything in their power to keep me healthy day in and day out. I will never forget the strict routine- wake up, do treatments, eat a fatty breakfast, go to school, come home, eat a snack, do physical activity, do a treatment, eat another snack, do homework, eat a big dinner, do nightly treatments then eat another snack. At the time I was naive, I wasn’t sure why they made me do all of these things or why they added oil and butter to every meal. Even though childhood was difficult for my sister and I, my parents made it normal. We travelled, we went out to eat, we had camp outs, and we honestly had more adventures than most of my friends had. They made sure to make us feel normal despite our CF. They made it known to us that anything was possible and we could do anything we wanted to. They made it known to us how strict we had to be with our health and the consequences if not. My parents put Molly’s and my life before their own and if it was not for them we would not be here today. My parents are my best friends. We are a very close family and even though I would not like to admit this sometimes, CF made us an even closer family. We have gone through so much together, which has shaped our family for the better. We do almost everything together. If you see one of us, you probably see the rest of us. My parents are a huge reason as to why I am able to start this nonprofit; they have helped shape my future in many more ways than my health.

 

Around middle school, the summer going into 8th grade, specifically, was when my lifestyle improved drastically. This was also around the time I enrolled in the clinical trial for Orkambi. I became active in almost every sport. Literally. You name it I did it. I received good grades, I worked, and did just about everything else my friends did, if not more. However, behind the scenes I was doing way more than anyone would ever know. I was fighting for my life, there are zero days off with Cystic Fibrosis. 

 

I went to college at Penn State University and received an engineering degree in Computer Science. I graduated with a full time job offer lined up for a defense company. I moved into my first apartment. I bought my first car. I ran a half marathon. I was traveling. I was ten years hospital free. As time was passing, I never really took a step back to look at how far I came. I always said “What is next? What can I do now to prove CF wrong?” I never stopped to give myself credit. One day during the spring of 2020, I finally stopped when the whole world stopped. I realized I was beating Cystic Fibrosis. I realized I was the healthiest I have ever been. I realized I was planning my future without thinking about how CF would affect it. I realized I finally had everything I have been working for my entire life, my health. I also realized I had everything to lose.

 

Most people see me as an inspiration, I am positive, energetic, driven, and passionate. I never take no for an answer and if I want something, I make sure I go and get it.  All of these qualities were learned through my journey with CF. Cystic Fibrosis has taught me to take the good days with the bad, remember someone else has it worse and that tomorrow is never guaranteed. Life is what you make of it. I have learned to try my best not to get upset over the little things and to always carry a smile on my face. My life is not perfect nor will it ever be. I have my bad days like everyone else, I cry to my friends questioning this crazy world. Nonetheless, Cystic Fibrosis has taught me if I have my family, my friends, my health, and a roof over my head I am far more lucky than most. My life goal is to help people, inspire people, and radiate sunshine long after I am gone.