CF Diagnosis: Then and Now

When our son was diagnosed 13 years ago, cystic fibrosis was not a disease that my husband and I were familiar with. In all honesty, I had heard it a few times in passing but really had no idea what it was. My first thoughts were “Is he going to die?” and “Will he be able to walk?”.

I know what you are thinking... Looking back, I feel like those were some very dramatic thoughts. In my defense, I didn’t know much about the disease, so my mind went straight to the two worse things that it could: Living and quality of life.

Pro-tip: Don't Google

Since I had all weekend to sit in my thoughts and find out as much as I could about CF, I did what every other mother would have done: I Googled. Pro-tip: Don’t Google. Always get information from sites like Cystic-fibrosis.com or the CF Foundation. Googling was a huge mistake on my part. But since I didn’t know any better, I did Google and the outcome was disastrous. I spent a sold two days in front of the computer thinking that I was learning, but in reality, I was reading a lot of misinformation and scaring myself.

A dark time

His diagnosis was a kick to our guts and the air was sucked out of us for weeks. There we were, new parents who barely knew what to do with a newborn much less a sick one, with a baby who was in the negative percentile for weight, all while having this dark could of potential death hanging over us. It was a really dark time in our lives.

Finding our routine

As the year went on, our son went from underweight to having a pretty good BMI. It took a lot of work to get him there, but things didn’t seem as dire as they felt in the beginning. There was still a lot of sadness, but we found our routine and the days didn’t feel as heavy. We accepted our new normal and as each year ticked by, the dark clouds diminished.

Here we are on the cusp of him turning 13 years old. He is about to be a teenager and his future has never looked better. There is still a lot of fear and some sadness for what the future could look like but right now, there is more optimism than ever before.

Starting Trikafta and hope for the future

This time last year, he began his Trikafta journey. We were all on pins and needles waiting for him to be able to take that first dose. It felt like this was the miracle that those in the CF community needed and for it to happen in our son’s lifetime was unreal. To have access to this was a huge blessing.

Since being on Trikafta, our son has made some huge improvements. His lung function has increased 30%. He is gaining weight and keeping it on. He never coughs. He is a typical pre-teen that has to take some medication daily. It has really been incredible to watch.

We have all come a long way from then to now. But that’s what progress is. I have high hopes that this trend upward will continue and he, along with others with CF, will continue to thrive, not just live.