Today is Cystic Fibrosis awareness day and I just can’t seem to let it pass without writing or sharing or giving it some recognition because for years I thought this stupid disease would change our family forever. I thought it would take our son away. I thought that he might not reach adulthood. Crazy thoughts? In hindsight yes, but at the time it was very real.
18 years ago, life for kids with CF looked a lot different than it does now. Being born in 2005 with CF certainly held more hope than previous years, and the prognosis was definitely getting better and better as time went on, but for new parents it was hard to see any light at the end of the tunnel.
I vividly remember carting my precious baby around the Women’s and Children’s Hospital, side-eyeing the skinny young teenagers I’d see who were muffling coughs with hunched shoulders. During those early years, there were some familiar teenage faces who would be strolling the hallways and riding the elevators. I never knew them by name, but I knew that these were “CF’ers” and I was staring at my baby’s future.
We continually hoped that he would be one of the “lucky ones”, the ones who hardly went to hospital and barely caught a cold. There doesn’t seem to be much rhyme or reason as to who gets chosen to be a “lucky one”. It’s pot luck in a pretty shitty competition.
As I clutched my son, literally and figuratively, through the early months, I honestly thought that our life, especially my son’s life would be dictated by this disease in the most horrible ways. I also thought that I would never be able to leave him or be away from him, that I could never go back to work, have a hobby, an anything. So overwhelming was the prospect of what this disease could do, I was crippled with fear of the future.
But as it does, time marched on, and my deluded thoughts and anxiety for the future settled, while we rode the roller coaster of CF. We navigated our way through some pretty hectic kid juggling phases and at times, some worrying moments but amongst that, life trotted along beautifully. In the background though, there was a cloud – a cloud that hovered without us ever knowing when it was going to rain. It was unpredictable – sometimes it was a brief sprinking shower and other times a lightning storm. A lot of the time it caught us by surprise.
Fast forward to 2022 – A magic little pill called Trikafta finally became available for people living with CF in Australia. I was cautious in my excitement and didn’t want to pin all of my hopes on it, while I simultaneously pinned all of my hopes on it.
Luckily for us, this little pill turned out to be pretty magic. It’s been just over 12 months since Mac started Trikafta and it’s been just over 12 months since he’s needed antibiotics. The cloud seems to have lifted a bit. It’s still there, but it seems to be a fair weather cloud these days and the future looks very different than it did before.
In saying all of this, Trikafta isn’t a cure for CF. Mac has definitely drawn the long straw when it comes to having such a fabulous improvement taking this medication. Some people with CF don’t have the right genotype to take Trikafta and some can’t take it due to rare side effects. For others, it’s simply a case of it just not working as well for them.
So until a cure for CF is found, I’ll continue to do my annual awareness shout-outs. I’ll keep wishing for the same thing each year as I blow out my birthday candles as well as cross my fingers that CF will one day mean Cure Found.
M