Trikafta Twins

(Orginally published at cff.org/blog)


For years in Kansas City, our local CFF chapter held a fundraising event called the Breath of Life Ball. My sister and I attended a few times with our parents, a huge treat for us because it was held at a fancy downtown hotel with amazing food – and we were all about the food. We got to dress up and drink all the Shirley Temples our preteen hearts desired.


One year at this event, I think I was around twelve, the fun drained from the evening as I learned about the median life expectancy for people living with cystic fibrosis.


I distinctly remember sitting with my sister at a table in the back of the ballroom. Each year, after guests had been fed dinner and a cocktail or two, a video played on the big screen, intended to pull at heart strings and loosen purse strings.


That year, the video presented me with information that, somehow, I hadn’t ever heard: the median life expectancy for someone living with CF was (at the time) around 40 years old. As a twelve-year-old, forty still seemed pretty far off, yet I knew that my parents were creeping towards forty and they didn’t seem that old.



I sat there and tried to look unaffected, aware of my 10-year-old sister next to me, wondering if she had heard that same sentence. Meanwhile, my mind was whirring with all the implications of this new information.


I didn’t talk to my parents, my doctors, or my sister about what I learned that night. It seemed too delicate a conversation, like if we talked about it, we would breathe it into being. So instead I internalized it.


Through high school, college, my first job, and into my adulthood, I planned my life around me – my interests, my education, my travels, my whims. I knew I wanted to get married – that, I had always felt – but a mother? That title wouldn