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Samantha

I live in Brandon, Manitoba and grew up in White River, Ontario. I was born with Neurofibromatosis 1 (NF1), a genetic disorder that causes tumours to form on nerve tissue. NF1 runs in my mother’s family but I am the only one with a facial difference. The tumours affect my optic nerve and I have undergone multiple surgeries over the years.

The tumours are usually benign; however, the risk of getting cancer is higher in NF1 patients and I developed brain cancer when I was 16. Along with my family and friends, my community really supported me through my long, tough battle with cancer.

Thankfully I am in remission, but the effects of cancer and the treatments have affected my balance. I had to give up activities that I loved including figure skating. I’m the kind of person who can’t sit still so I always find new things to keep me busy. Right now during COVID, I’m making face masks for my work colleagues and friends.

A big part of my childhood was Manitoba Camp Trailblazers. I have attended for 10 years and met two of my best friends there. Now I’m a volunteer at camp because I remember how as a camper it made a huge impact on me to meet leaders who had a facial difference themselves and who understood a lot of my experiences.

Growing up, I worked hard and got good grades despite my learning disability with working memory. I am now a healthcare aide and my ambition is to become a nurse working in paediatrics.

When I’m out in public, sometimes people will ask what’s wrong with my eye or assume I’ve been in an accident. I have heard kids asking their parents about my face and the parents shushing them because they don’t want to be rude. But curiosity isn’t rude. I’m fine if the parent encourages their child to politely ask about my difference. That’s the way people learn.

I am determined. I am resilient. I am grateful for my support system.