I have a 7-year-old daughter named Ava, who lives with cystic fibrosis (CF). She is hilarious, very sassy and constantly loves to put on a show for anyone who will watch.
Ava was diagnosed in utero at around 24 weeks. I’d been having some abnormalities with my pregnancy, so my doctor sent me and my husband for some additional genetic testing. After a few weeks of testing, it was confirmed that Ava would be born with CF.
I didn’t know a thing about CF and had no known family history of the disease. I began researching and trying to understand what I could expect once she was born. It was very scary and tough, trying to navigate the new waters of the CF medical world. When Ava was born, she was immediately rushed to Sick Kids hospital. She spent the first 8 months of her life at the hospital, before I could bring her home to start her real life as part of our family of four.
Now, at seven, Ava doesn’t know of a life different to CF. The medication, treatments and physiotherapy have always been a part of her life, for as long as she can remember. She knows she is the only person we know who has CF but she wears it like a badge of honour. She is more than happy to share about living with CF and what it means and how it affects her body.
For myself, as a mom, there are layers of extra things that CF adds onto my day. I never leave the house without enzymes and tend to plan our days around treatment times (or creatively work them into our days!). But above all, having a daughter with CF means that I worry. The worry started the day I got her diagnosis, and it won’t end, until there is a cure for CF. I worry about her future, and what it might look like. I worry with every little wheeze, or cough. And I worry at every clinic visit, while I wait to see her numbers for weight, or pulmonary function.
Access to Trikafta would mean everything to my family. It would truly be lifechanging. Although it isn’t a cure, Trikafta would give me the ability to be confident in Ava’s future. Watching people’s lives across the globe being changed by this drug is more than I could have ever imagined when I first received Ava’s diagnosis. As I sifted through all the statistics and information on the internet, it felt like her entire life we would be climbing uphill. Accessing Trikafta would be the first thing to let us breathe a small sigh of relief.
I hope for Ava, and for all of those walking the path of CF with her, that a cure for CF is found. I think that everyone with CF deserves a chance to give this life all they’ve got. I hope other families will be spared from the heartbreak we experienced during the first few years of her life, watching her grow and hit milestones within the walls of a hospital. I hope Ava will be able to live a full, fun, adventurous life where she can achieve whatever she sets out to – without CF holding her back.
Send a letter to your elected official and ask that they ensure Trikafta is funded for everyone aged six and up who can benefit. It’s more important than ever that we make our voices heard!