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My Cystic Fibrosis diagnosis strengthened my faith

Published: March 23, 2022   

By Jake Jansen
Special to Arkansas Catholic

Jake Jansen

As a child growing older, I began to notice certain things about myself: the way I spoke, what I liked doing, how others treated me and the direction I was headed in life. When I was in fourth grade, I pompously began to feel self-assured that I knew where I was going in life. Shockingly, it turns out I was wrong. 

At 9 years old, I began to cough a lot, which worried my parents. My mom scheduled an appointment for me at the Pulmonary Department at Arkansas Children’s Hospital (ACH). When I got there, the doctors asked a barrage of questions, and they tested me for multiple different illnesses. We returned a few days later, and a nurse pulled me out of our private room to measure my height and weight. While I was gone, my mother was told that I had tested positive for a genetic lung disease called Cystic Fibrosis (CF). It was a chronic disease that causes the mucus in the lungs to be very thick. The disease can cause lung infections and can cause people trouble breathing. 

She told the doctor to wait and called my dad, who worked at ACH at the time, to come down. They were both very upset and sad but pulled it together when I returned. 

The following days were some of the roughest for my family. I saw my dad cry for the first and only time when he was on the phone with my grandfather telling him about my diagnosis. My mom said she would drop my three younger brothers off at school and would come home and cry on the phone with her mom. Even my younger brother, who was in second grade, got a note sent home because he had his head on his desk all week. Even though I was the one diagnosed, everyone around me was more upset. 

Their sadness wasn’t because they knew what would happen to me but because they lacked knowledge. All my parents knew about Cystic Fibrosis was a chronic illness that would greatly harm my life.

My diagnosis challenged my parents and my own faith in different ways. They were both shocked that something terrible would happen to their firstborn child. They had been good people, had gone to church, been good parents and were faithful, so why would something like this happen to their child? 

For a fourth grader, there is very little deep thought about anything like this other than, “Why me?” and “What is CF?” Over time, I have thought more about my diagnosis and what it really means for me. 

While I was thinking about questions like these, it made me realize that to find the answers truly, I would have to dig further than just self-reflection. I had to pray more. If I were ever going to find the answers to my questions, it would be through God’s guidance and love. 

The most important realization that has come to me is that if you stick through it and remain faithful, good things will happen. 

I had this realization in 2020 after the Food and Drug Administration approved a new drug called Trikafta. My doctors highly recommended it for me as the results had been astounding, and my parents quickly applied for it. I was suspicious; I had heard of countless drugs that would practically cure CF but barely made an impact in actuality. 

When I started using Trikafta, the results were almost instantaneous. I completely stopped coughing, and I felt like my lungs were so much clearer than before. 

As I’ve grown older, being diagnosed with Cystic Fibrosis has only strengthened my faith. In many ways, I have a very good life, I have a loving family, I go to a great school and I have good friends. If I didn’t have CF, I would have nothing that made me challenge my faith. If I didn’t challenge my faith, I don’t think that my conviction would be as strong as it is today. 

When I was first diagnosed, my family and I would all have said that my diagnosis probably would only have negative effects on us; now, our response would be almost completely opposite. 

Jake Jansen, a junior at Catholic High School in Little Rock, attends Christ the King Church.

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