Hi, I’m Parker and I have Goldenhar Syndrome. I have some big health challenges along with my facial difference – I was born with tricuspid atresia, a serious heart condition. On top of my facial reconstruction surgeries, I have had five open-heart surgeries. I don’t recommend hospital food.
My mom has been there for me through all my hospital stays and has been my biggest cheerleader and fan. She encourages me to keep active, take on new challenges, and stay positive. I’m a member of the 779 Black Knight Air Cadets. It is a great group and has taught me a lot about myself. Pre-Covid, I got involved in a lot of activities at school. I ran and was elected to student council, sang in the choir, and helped with the hot lunch program. This year, I am doing at-home learning and miss my friends very much. I’m also spending a lot of time playing video games.
I had an awesome time attending Camp Trailblazers. The first year I went to camp and loved it. This past year it was online, and we still had a lot of fun. I made a lot of new friends and it was great being with everyone and learning their stories. I was asked to be part of the Beyond My Face video and to talk on TV about living with a facial difference. It was weird being on TV, but meeting Ben Mulroney was cool.
Most people don’t know much about Goldenhar or about facial differences in general. That’s why I take every opportunity I can to educate people. When we moved in the middle of my grade 6 year, I gave a speech at my new school about my condition. And if someone is staring at me, I’ll sometimes say, “You look curious. Do you have any questions?”
I know that people are just afraid of the unknown. I’m teaching them that facial differences are not something to be afraid of.
If my family were describing me, they would say I’m goofy (and my mom would say I’m an eating machine)!
I would say that I am kind. I am funny. And I am loved.