The Tirabassi Family: Our Journey with Cystic Fibrosis
NOVEMBER 23, 2023
As the mother of a child with cystic fibrosis (CF), I’ve learned that hope is a powerful force. It’s what drives us forward, pushing us to go further for everyone living with this relentless disease. Today, I want to share our story — a story of struggle, resilience, and a plea for your support in making a life without CF a reality, not just a distant dream.
Matthew, my youngest son, was born with CF, a genetic disease that has profoundly impacted every aspect of his life. From countless hospital visits to daily nebulizer treatments and the constant fear of infections, CF has been an uninvited guest in our family’s journey. Despite these challenges, Matthew’s spirit remains unbroken. His smile, even on the toughest days, reminds us of what we’re fighting for.
For years, we have watched promising treatments like Trikafta emerge, offering hope to many with CF. Yet, Matthew, due to his specific genetic makeup, cannot yet benefit from this drug in Canada. This reality hits hard, knowing that such life-changing medication exists, but is just out of reach for him. It’s a stark reminder of the work still left to do.
Our journey is not unique. Thousands of families share similar stories, bound by the common thread of hope and the relentless pursuit of a treatment that will work for all Canadians with CF. The advancements in CF research have been monumental, but our fight is far from over. Access to these groundbreaking treatments needs to be universal, not selective. Every individual with CF deserves a chance at a longer, healthier life.
Imagine a future where children like Matthew can breathe easily, free from the burden of endless treatments and the fear of what tomorrow might bring. This is the world we strive for.
Your donation can help make groundbreaking research possible, support families affected by CF, and ensure that access to life-saving medications is not a privilege, but a right. Every dollar brings us closer to making “one day” without CF into one day, now. Please give today!
Sandra Tirabassi
UPDATE: Due to the recent Health Canada decision to approve Trikafta for an additional 152 rare mutations, Matthew has now been approved for Trikafta! The family is thrilled and are now awaiting word on funding. Thanks to our community for advocating for greater access to CF treatment and for funding research to ensure no one is left behind.