At just 15 years old, my life took an unexpected turn that would reshape my future. I'm Athina Merckx, and I live with a rare condition that affects only 2 to 4 people in a million. This is my story of challenge, courage, and unwavering hope.

It began innocently enough in February 2019 with knee pain after swim practice. What started as a concerning bump led to a diagnosis that would change everything - Desmoid Fibromatosis. Our search for answers took us to Columbus, Ohio, where I underwent surgery to remove the tumor. But this was just the beginning of my journey.

The recovery brought its own battles. I developed Chronic Regional Pain Syndrome (CRPS), experiencing pain beyond anything I could have imagined. Drop foot from nerve damage meant countless hours of physiotherapy, testing my determination daily. Yet even after a year of recovery and progress, my three-month check-up MRI revealed new tumors in my right leg.

My fight continued with multiple rounds of chemotherapy, starting in November 2019. The port in my chest became a constant reminder of my battle. While the initial two-year treatment plan proved too challenging, I persevered through various chemotherapy options, each bringing its own trials and disappointments. In June 2023, we tried a new approach - Cryoablation, freezing the tumors from within. Though this brought some relief, my journey with treatments continues.

Today, I'm facing new chapters in my story. I've recently completed IVF, thinking ahead to future possibilities - a reality many young desmoid patients must consider. There's new hope on the horizon with Nirogacestat, the first FDA-approved medication specifically for desmoid tumors. While balancing life as a full-time student at the University of Victoria, I remain optimistic about this next treatment.

My experience has taught me that while this disease may be rare, the strength to fight it isn't. Through Athina's Ride, I'm turning my personal battle into a movement of hope and action, proving that together, we can make a difference in the lives of all those affected by desmoid tumors.

The Desmoid Tumour Foundation of Canada (DFC) is the official Canadian charity for desmoid research.