Looking at my 14-year-old son, Dylan, you won't see his surgery, feeding tubes, or infusions. Instead, you'll see a regular teenager and all the excitement and awkwardness that come along with that. Like him, my face doesn't show the out-of-province trips to the Calgary Children's Hospital or the sleepless nights filled with worrying. At first glance, we seem like a typical family, though for years my son has suffered in silence.
Last year, Dylan was diagnosed with Crohn's disease. Finally having an answer for his sickness came as a relief; before that, he endured five years of misdiagnoses, largely because symptoms tend to present themselves behind closed doors, out-of-sight in the bathroom. Still, I felt helpless as I watched his appetite disappear, his growth stop, and his confidence dip.
Dylan's chronic condition comes from an abnormal response from his body's immune system. It causes excruciating pain, with frequent trips to the washroom creating great embarrassment. In practical terms, it has influenced every aspect of his life, leading him to quit hockey, miss field trips, and decline invites to social outings. Throughout, he sheepishly looked for excuses for his absences. Hesitant to tell his friends about his disease, he felt isolated and alone.
Eventually, Dylan found some relief in the form of a treatment that he gets as an infusion every six weeks. While it has reduced many of his symptoms, the worries around his condition remain -- and with them come questions. Will he be able to go to university? Hold down a job? Travel? Raise a family? These are the uncertainties that keep me up at night. But lately, I've had renewed hope because this summer Dylan will go to a camp for kids with Crohn's and colitis. This opportunity gives Dylan the chance to feel normal, to connect with people like him, and to share his experiences with kids who understand the challenges he faces every single day.
Camp Got2Go, a weeklong overnight summer camp held in two locations (Western and Eastern Canada), is run by Crohn's and Colitis Canada and brings together children and teenagers with Crohn's disease and ulcerative colitis from across Canada. I am so happy that Dylan won't have to worry about negative preconceptions around Crohn's disease, so he can concentrate on what really matters: making friends, having fun, and just being a kid.
Though, this isn't only about taking a break and finding a community - it's also about providing a platform to talk about a heavily stigmatized disease. For too long these children have lacked a voice.
Right now, almost 6,000 Canadian children have been diagnosed with Crohn's disease or ulcerative colitis and this number is on the rise. In fact, no country is seeing as rapid a growth rate as Canada. And yet, we often don't talk about this in an open and honest way. Camp gives Dylan a way to do just that. And I feel a responsibility to my son to do the same, which is exactly why I wrote this post.
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