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Parenting Camp Trailblazers lets kids with facial differences just be kids

Twelve year old Alexandra Petheriotis is photographed in her Toronto home on May 23 2017. Born with a cleft lip, Alexandra had surgery at the Hospital for Sick Children to correct the facial issue and will once again be attending Camp Trailblazers, a camp for children with facial differences.

Fred Lum/The Globe and Mail

Summer camp brings on a wide range of emotions, from nervous butterflies fluttering in the stomach of kids who have never been away from home before to bouncy excitement for those who have spent the school year eager to get back.

For Alexandra Petheriotis, departing her Toronto home for Camp Trailblazers means all of those emotions are multiplied practically beyond measure. The 12-year-old was born with a cleft lip and palate and this is her fourth summer at the camp, which is targeted at Canadian children who have what are known as facial differences, including cleft lip and palate, port wine stains and other conditions.

"Getting on the bus to go is like the best thing ever because you know in two hours you're going to be together for an entire week," Alexandra says. By "together," she means with the friends she has made at the camp. They – and all the other campers – have grown up with a facial difference, an often isolating, self-conscious experience that Trailblazers allows them to escape from for one fun, glorious week.

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There are niche summer camps for just about any interest, from video-game design to playing rock 'n' roll. But for kids who are dealing with issues much heavier than learning how to nail riffs or code in binary, a specialty camp exclusive to those like them is an all-too-rare opportunity to escape stigma and simply enjoy being a kid.

"There are very few spaces in their lives where they just can be who they are. Camp gives them the ability to do that," says Anna Pileggi, executive director of AboutFace, the Toronto-based national charity that operates Camp Trailblazers.

That sense of relief is shared by the campers and families who take advantage of Camp Oochigeas, for children with cancer, Camp Ten Oaks, for children from LGBTQ+ identities, families and communities, Camp Oki, for children with congenital heart disease, and other similar camps for kids coping with all-too-adult issues. Some are free to attend, while there's a wide range on cost for others, anywhere from $150 to $1,000.

Camp Trailblazers was launched following a mid-1990s AboutFace membership survey, which revealed that while there are a number of programs for infants, small children and older adults, there was a lack of services for adolescents. The organization set out to change that, since, as camp director Randy Pielsticker points out, "being a teenager with a facial difference is obviously one of the most challenging times growing up."

Today, AboutFace runs camps in Ontario, Newfoundland, Manitoba, Nova Scotia, Alberta and Saskatchewan: Last year, 92 kids between the ages of eight and 18 attended the camps and this year, the organization hopes to attract 110. It costs between $150 and $750 to attend, on a pay-what-you-can honour system.

This fall, the world will get a better understanding of what it is to be a kid with a facial difference with the release of Wonder, a movie based on the bestselling novel about a boy with a facial difference. The film stars Julia Roberts and Owen Wilson as the parents of August Pullman (played by Canadian Jacob Tremblay), a 10-year-old trying to have a normal childhood.

In that vein, Camp Trailblazers is in many ways a summer camp much like any other, offering canoeing, rock climbing, swimming, crafts, horseback riding and songs around the campfire. But there are also workshops where kids with facial differences can discuss whatever happens to be on their minds in a supportive, understanding environment.

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"We talk about teasing and bullying. We talk about relationships. We talk about friendships," Pielsticker says. "With the younger kids, we focus on first impressions, how and where to make new friends, things like that. With the older kids, we talk more about dating and transitional periods, like starting high school."

Alexandra has enjoyed the group chats ever since her first time at camp. "You learn things about other people. Even though you might have a facial difference, you can still be clueless to a million other facial differences that there are," she says.

For Zackary Ratz, a 15-year-old who lives in London, Ont., the group chats are a welcome chance to talk about his feelings. It's also a chance to answer questions about his surgeries – he's had eight so far – posed by younger kids who, like him, have cleft lip and palate. "When you've been there for four or five years like I have, you really get looked up to, especially if they're kids with the same facial difference," he says.

Of course, not everyone loves the group discussions. "To be honest, it's not exactly my favourite part of the camp," says Isaac Maniloff, a 15-year-old who lives in Ottawa and would rather spend his time rock climbing. "Plus, I'm not that extroverted, so I really do try to avoid conversations where I can," he says. That said, "everyone is super nice and there's really no feeling like the odd one out."

Connecting with those from other cities is another bonus of the camp: Zackary says one of his best friends is a girl from Uxbridge, while Alexandra sees the week as a chance to hang out with friends from as far away as Windsor. Social media allows campers to stay in touch throughout the year, but it's not the same as being together and it's always sad when camp week comes to an end.

"The bus ride home is so quiet," Alexandra says.

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