Victoria

Ontario, Canada
Victoria

My CMT journey began with early onset scoliosis, which manifested when Iwas just 12 years old and required two spinal fusions and reconstructive surgery on my ribs at the age of 18. My diagnostic journey was fraught with challenges, including limited testing options in Canada, but I courageously stood up against political obstacles to secure the necessary testing. It confirmed my CMT type 4C when I was in my late 20s.

My journey with CMT took an unexpected turn when I had an unruptured brain aneurysm, requiring brain surgery. This event marked a turning point in her life, prompting me to leave my full-time job and focus on my health. Through the early years of my journey, I yearned for a supportive community but found limited resources and understanding from medical professionals. This longing for a community of CMT warriors was a driving force behind my advocacy efforts.

Despite facing numerous challenges and health setbacks, my determination led me to volunteer to lead the CMTA’s Edmonton, Canada branch. I connected with fellow CMT warriors and fostered a sense of belonging within the community. My journey also intersected with the “Wheelie Peeps,” a group associated with spinal cord injury in Alberta, which further expanded my network of supporters. This journey eventually led me to become a model of neurodiversity with Kello Inclusive, a talent agency promoting diverse, disabled and visibly different talent, including young children with CMT.

My advocacy took a more public turn when I became one of the stars of the CBC docu-series “Push,” which offers viewers an intimate look into the lives of individuals with physical disabilities. The show, available to stream on CBC GEM in Canada, highlights a diverse group of people living with disabilities, including members of the “Wheelie Peeps.” Through my participation in “Push,” I aim to break stereotypes, push boundaries, and promote acceptance and knowledge about disabilities.

I emphasize the importance of finding a supportive tribe. My advice to newly diagnosed individuals is to seek out fellow warriors, lean on each other and know that they are not alone. I also emphasize the importance of living a healthy, stress-free life and maintaining physical and mental well-being.