JULY 15, 2022
My name is Marilyn Snarr. I have a six-year-old son named Jack, who lives with cystic fibrosis (CF).
My husband, Phil, and I were terrified when we learned of Jack’s CF diagnosis four weeks after he was born. It was an incredibly difficult time for our family. We tried our best to insulate ourselves from the scary stories and statistics that can be found about CF, but I still felt overwhelmed and afraid. From the moment the doctor shared the news, I found myself suddenly on a path I didn’t think I would ever face, and I wasn’t sure if I would have the strength to handle it.
Early in Jack’s life, our family found living with CF to be overwhelming and isolating. Our family kept to ourselves for the first few months. We were afraid of taking our family out, for fear of making Jack sick. We made the decision that one of us would stay home with our children so that Julia, our daughter, and Jack, would not need to attend daycare. This was not an easy decision and it had large financial implications. Friends and family were incredibly supportive through Jack’s diagnosis, but that was a very lonely and overwhelming time for our family.
As Jack grew older, our family slowly found our footing. Jack has handled so much in his short life and is so incredibly brave. Doctor appointments that were once overwhelming for him are becoming much more manageable. Julia has been an enormous source of strength and love for our family. She is very protective of her little brother and always wants to hold his hand to comfort him when he is afraid. She spends time with Jack while he is doing his treatments and is so proud of him when he comes home from clinic appointments. I am incredibly proud of both of my children and the strength and resilience they have shown.
While Jack’s diagnosis initially terrified us, I have found a new sense of gratitude through my family’s journey with CF. I see things that I may have taken for granted before with new appreciation. Time spent together as a family, our health, good doctors appointments all now take on a new meaning. I’ve also found strength within myself that I didn’t know was there.
Through advocacy and community involvement I found a voice I hadn’t used before. I’ve been advocating for Trikafta for the last two years and am hopeful that Jack will be able to access it soon, now that he is six. I advocate so that everyone living with CF can have the opportunity to receive the best medicines and care for their cystic fibrosis.
For my family, Trikafta represents hope. Hope for Jack’s future, hope for Jack’s health, hope that Jack gets to lead a long and happy life. When your child is diagnosed with CF your mind immediately goes to the fear of losing them. You are hoping for new treatments to be discovered that will improve your child’s life. Trikafta is the very thing that we were hoping and praying for when we learned of Jack’s CF diagnosis.
The CF community has been an amazing source of strength and friendship. Other families living with cystic fibrosis have been an invaluable support to us, offering guidance along this path. I want to be involved in the CF community and give back. I don’t want people living with CF and their families to feel like they are alone, as we did in the early days. I want them to know that they are part of a supportive community that will work hard to ensure individuals living with CF and their families are taken care of. This is a community that I love and care for very much. It is important to me that everyone feels as supported as possible on their journey with CF.
I continue to “go further” for the cystic fibrosis community so that all of us can work together to lift each other up. We all have different strengths and gifts and they may not all look the same, but we can all find a way to help each other out. We may need to stretch ourselves or look for strength or a voice that we didn’t think we had. But if we all work together and support one another we can improve the lives of everyone affected by cystic fibrosis.