Help kids with facial differences become leaders

Written by Duncan's mom Alison
Duncan is a 13-year-old boy with Sturge Weber Syndrome. He is in Grade 8, is a competitive swimmer, and has attended Camp Trailblazers the past two years.

If you ask Duncan about his earliest memory, he will say, “The Boat on Lake Sunapee!” Since he was a baby, we have traveled to New Hampshire every summer to swim, hike and to go on The Boat. When he became old enough to attend Camp Trailblazers, his first concern was missing this annual adventure. The dates don’t overlap of course, but if they did, now, after only two years he may have a real dilemma. That is how much he loves Camp!

As an infant, Duncan started his hospital and doctor visits when he was only 3 weeks old. We knew something was ‘different’ the moment he was born. His face was ‘bruised’ and we were concerned something had happened. The incredible doctors at SickKids in Toronto, informed us the bruising was a port wine stain, and that led us down the path to a diagnosis of Sturge Weber Syndrome. This involves a number of different things: glaucoma; strokes and seizures; and his birthmark.

We always knew he would need to find a place where his difference was celebrated. Not just a normal part of other kids’ every day, but a true celebration of how unique and beautiful he truly is. That’s where Camp Trailblazers has come and changed his perception. His worry for himself has diminished, not simply because he hasn’t been bullied, but because he has been welcomed and loved by so many kids and adults, who are just as unique, just as beautiful!

Talking to Duncan about Camp Trailblazers, the first thing you notice is his body language. He sits up straight and says, “It’s way better than Annie’s camp. It allows both genders and it accepts kids who are different.” He loves archery and of course the swimming, but his favourite part is sleeping over and living the day to day with kids like him. His friends from camp come up in random conversations throughout the year. He is thinking about camp ALL the time.

As Duncan finishes Grade 8, his big concern is high school and being treated like an adult, when he’s “just a kid.” He worries about meeting new kids and being in a school where they might look at him funny. This is when he wishes his face was ‘normal’. But if you press him about it, he will say, “I actually love my face. Without my face, I couldn’t go to Camp Trailblazers. Camp Trailblazers is the best!”