Hilary’s Story: Raising Hope for a Life Without CF

Hi, I am Hilary Becker and I’m here to share my remarkable journey of living with cystic fibrosis (CF), the transformative impact of Trikafta, and my unwavering dedication to CF research and advocacy. Join me as I reflect on my experiences and highlight the objectives that drive me forward in the pursuit of a better future for all those affected by CF. 
 
From the early days of my diagnosis at six months old, CF has been a constant companion in my thirty years of life. As I navigated the challenges and uncertainties, I discovered an unstoppable spirit within myself. Despite the grim prognosis given to my parents—that I might only live until my teens or early twenties—I remained determined to make the most of every moment. With unwavering support from my loved ones, I found strength and embarked on a journey filled with hope and resilience. 
 
My life changed dramatically when I started taking Trikafta in January 2022. Before Trikafta, my health was deteriorating, and hospital visits became alarmingly frequent. I battled double pneumonia, kidney stones, and debilitating muscle injuries. Exhausted, underweight and struggling to breathe, I found myself isolated in a hospital room during a global pandemic. Homecare became my new reality, as I managed my own treatments, needles and medications, desperate to survive. 
 
But then, in October 2021, a ray of hope emerged as I began my Trikafta journey. Like many others who have started this groundbreaking medication, my life took a 180-degree turn. No longer plagued by incessant coughing, I experienced restful nights, improved digestion and a regained sense of vitality. Trikafta breathed new life into my weary lungs, allowing me to thrive and embrace a future filled with possibilities. 

While Trikafta has been life-changing for me and others, I am aware that not everyone has access to this cathartic medication. I lost a dear friend last year, who was part of the 10 per cent of people with rare mutations who cannot benefit from the latest CF modulators. It pains me to know that while many of us are flourishing, there are still those who are left behind. 
 
My hopes for the future of CF research, care and access to medicines are multifaceted. Firstly, I yearn for a day when CF stands for “Cure Found.” We must continue to push the boundaries of scientific research to uncover breakthrough treatments and, ultimately, find a cure. Additionally, it is crucial that countries without access to gene modulators obtain the necessary resources to provide these life-changing medications to their CF communities. 

We must focus on developing modulators tailored to the rare mutations that have thus far been left unaddressed. The diversity within the CF community demands inclusive solutions that cater to the unique needs of all individuals. We must also strive to offer alternative modulator options for those who experience adverse side effects from current treatments, ensuring that no one is left without viable options. 

To those considering supporting or donating to Cystic Fibrosis Canada, I want to express my heartfelt gratitude. Your contributions make a tangible difference in the lives of individuals like me. With your support, we can continue to fund vital CF research and raise awareness about this complex disease. Together, we can forge a path towards a brighter future, where every person living with CF can embrace life to the fullest. 
 
Living with cystic fibrosis has shaped me into the resilient, hopeful and strong individual I am today. Trikafta has unlocked a world of possibilities, allowing me to thrive and dream of a future that was once uncertain. However, our journey is far from over. We must continue to advocate for those who have yet to benefit from new treatments, pushing the boundaries of research, and expanding access to life-changing medications. 

With every dollar raised and every voice raised in support, we come one step closer to a world where cystic fibrosis is a thing of the past. Together, let’s mold a path with unwavering determination, knowing that our collective efforts will pave the way for a brighter, healthier future for all those affected by CF. 

Cystic Fibrosis Canada continues to act boldly for all Canadians living with CF so they can live a life W/O limits. Be the reason that 4,300 Canadians dream more freely of their future. Help make that happen today.