LOCATION: Toronto

September 26 2013

I was born 38 years ago in Sudbury, Ontario. My mother took thalidomide during her pregnancy. This drug has been directly related to me being born with a facial difference. They kept me from my mother for three days to protect her from the reality that I had Treacher Collins Syndrome and looked different. When she finally saw me, her attitude was that she got exactly what she wanted, a little girl with lots of dark hair and dark eyes.

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September 26 2013

My parents were told that the medical community in Sudbury could not provide the specialized care I required. So, when I was about three years old we moved to Toronto to investigate treatment. Dr. Ian Munroe was my first specialist and started my surgical plan at age 11. This plan has worked-out to include 41 surgeries to date. I was Dr. Munroe’s first Treacher Collins patient and we are still in touch today. But it wasn’t until age eight that I faced the reality of my facial difference. I remember standing with my sister in front of a mirror comparing our faces. We were the same, each with two arms, legs and eyes and then I touched the hard bones in her face and realized the difference. I knew I only had one ear, but because I had so much thick black hair I thought no one would notice. But they did and I was often called names and teased at school.

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September 26 2013

My sister and brothers were very protective and often stepped in to end the taunts and teasing. But they couldn’t stop my isolation. I was absent a lot because of my ongoing surgeries and I missed most of the teenage social interactions. I had to constantly rebuild friendships after being away and during high school I never had a date. No one ever invited me to school dances. My parents always treated me equally to their other children and had the same expectations of me, except when I had surgery. During my surgeries, I received special attention. One of my parents would stay with me at all times in the hospital. Then when I turned 18, my parents decided that I was ready to make my own medical decisions. I remember riding the subway on my way to an appointment feeling both overwhelmed and loving the sense of freedom. It really was the beginning of my coming to terms with my appearance.

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September 26 2013

Having Treacher Collins has also had an impact on my daughter’s life. During my pregnancy, I knew there was a 50 percent chance of passing it on to my baby. When she was born, all I wanted to know was whether she had two ears. The nurses laughed and said, “yes, but most mothers asked about ten fingers and toes.” Of course, Elodie is my greatest achievement. So I decided to be honest and up front with her about my facial difference right from the start. When some boys in her class started to tease her and laugh at me, it was important to me to confront the situation. That’s why I went to her school and presented the AboutFace School Program, Unwrapping The Package, because Elodie and I face the issues and situations that come up together.

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September 26 2013

I first got involved with AboutFace when I received a letter from Sunnybrook Hospital about participating in a survey on facial differences. I was very interested to learn more about the organization. Becoming a volunteer with AboutFace has helped me to face the world and find my voice. It was very important to me to be trained on the school program and reach out to children. I get great satisfaction from going to schools, addressing the questions and whispers and seeing kids get my message. No matter what we look like on the outside, we are all the same on the inside.

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