I was diagnosed with CMT at just two years old due to a spontaneous mutation, meaning that I am the only one in my family with it.

Living with CMT has been a daily battle, one that I've often had to fight in silence.

Growing up, I often felt alone and misunderstood. I was often met with either frustration or pity from others who couldn’t understand why I couldn’t keep up, why I walked differently, or why I seemed so “clumsy.” This led to years of bullying, not just from kids at school but also from adults who should have known better. 

Living with CMT also meant countless doctor’s visits. I’ve lost count of the number of times I’ve been poked, prodded, put through painful procedures, and subjected to the insensitive treatment of doctors that has still left me with medical trauma.

CMT means unpredictability is a part of my daily life. On good days, I feel strong enough to walk 2km without stopping. On tougher days, just walking down the block feels daunting and requires support from my husband.

But more exhausting than the physical struggles are the mental and emotional challenges. The way society views and treats disability means you are constantly living life on hard mode. From navigating accessibility issues to facing subtle discrimination and misconceptions, each day brings its own set of emotional hurdles.

I fight for a cure not just for my own future, but for the future of everyone living with CMT. This drive is fuelled by the hope that one day, no one--especially no child--will have to endure the pain and challenges of living with this disease.