I was born in 1983, beginning my lifelong journey with cystic fibrosis. My early days were fraught with challenges. I had a swollen abdomen at birth, struggled with failure to thrive, and suffered from reflux. At 3 months old, I was still at my birth weight.
It was during a visit to the doctor that my aunt, after giving me a kiss, remarked that I tasted salty. A nearby physician overheard her and suggested I be tested for CF. The diagnosis came swiftly, and I began a regimen of enzyme treatments that helped me gain weight and navigate the early years of my life.
As I grew older, I completed school and university, but I carried a heavy burden: the stigma of my diagnosis. Sharing my reality with others felt like opening a door to pity — a reaction I found suffocating. Each time I revealed my condition, I was met with sympathetic glances and words of encouragement that felt more like chains than support. I began to see pity as a motivation killer, a crippling force that stifled my spirit. So, I chose silence.
I went through life praying for a miracle, trying to make the most of every moment — both in and out of the hospital. I learned to appreciate the preciousness of time, focusing on what truly mattered to me. Yet, the weight of my unshared experiences lingered, creating a chasm between my inner world and the outside.
In 2022, my health took a sharp decline. I struggled to breathe, sleep, talk, and even laugh. Daily activities became monumental challenges. It was during this tumultuous time that I consulted my CF specialist, who suggested I start on elexacaftor/tezacaftor/ivacaftor (ETI) — a medication that could potentially change my life. However, the cost was prohibitive, and I found myself turning to crowdfunding to afford it. This process opened a new chapter in my CF journey.
As I sought support, I began listening to the stories of others who had undergone similar experiences with CF, particularly those who had started ETI. For the first time, I heard people articulate the trauma and symptoms that mirrored my own. Their words resonated deeply with me, illuminating the shadows of my own experiences. I realized that I had been carrying my trauma in silence, and hearing others share their struggles was both cathartic and eye-opening.
It was a revelation to understand that I was not alone in my fight; many others had walked similar paths — each breath a battle, each hospital visit a reminder of the fragility of life.
The realization that I had been living with unacknowledged trauma was profound. I began to see my CF journey not just as a burden but as a shared human experience. I understood that having CF was both a blessing and a curse. Every breath was a fight for life, and every procedure, anesthetic, needle prick, or hospital visit was a testament to my resilience. This newfound perspective empowered me to confront my own struggles and embrace the stories of others.
With the support of my loved ones, I was able to afford ETI. Within three hours of taking the medication, I felt a remarkable change. My sinuses began to drain spontaneously. After just one week since starting this miracle medication, I stopped coughing entirely and had no hemoptysis. It was as if a weight had been lifted, and for the first time in years, I could breathe freely.
This transformation ignited a fire within me. I realized that I had to do something to ensure that others with CF wouldn’t struggle as I had for 39 years. Thus, I founded a nonprofit organization called Breathtaking Fundraising NPC. The name reflects the duality of CF — it is a breathtaking disease, yet life can also be breathtakingly beautiful amidst struggles and hardships. My mission is to encourage others to share their stories of hope, courage, and survival, by creating a platform where we can uplift one another.
Through this nonprofit, I continue to learn about my own struggles and the challenges that remain. I am committed to advocating for access to effective medication for everyone with CF, ensuring that no one has to endure the same hardships I faced. My journey has taught me that sharing our stories can be a powerful tool for healing, not just for ourselves but for others as well. Today, I stand not only as a survivor but as a beacon of hope, ready to inspire others to embrace their journeys and find beauty in the fight for life.
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