It’s been a long road for Evan Lee, and he’s just 13-years-old.
Evan, who lives in Blackfalds and goes to Iron Ridge Junior, is the honourary chair for this year’s Gutsy Walk, which takes place June 4 at McKenzie Trails to raise funds and awareness for Crohn’s and Colitis Canada.
Diagnosed first with colitis, one of two forms of IBD, it took nearly a decade of symptoms for doctors to reach that conclusion.
“We had a surgery to remove the large intestine. A few months later, I was starting to have some symptoms again, so we went in thinking it was just an infection in the modified small intestine, but it turned out it was actually Crohn's,” Evan explains.
Evan, who plays lacrosse, knows he wouldn’t be able to live the life he does if it weren’t for his parents Thomas and Raelene.
“We don’t let him use it to make excuses for not doing something. Even when he’s not feeling well, we'll still have him go to practice or do his best at school,” says his mother. “The big thing we're always talking about is if he's had a bad night, we say we just need you to try. I don’t expect him to be a super hero, but at the same time, I won’t let him curl up and give up either.”
Because the cause of IBD remains unknown and because Evan was so young when he began presenting symptoms, Thomas says parents of a child with a chronic disease should not be afraid to advocate for his or her health.
“We always got hit with doing a test and never hearing from the doctor. You always have to advocate and follow up. If the test isn’t positive in one way, then advocate for another test, or for a specialist, or another doctor,” he says. “And inclusivity, don’t isolate your child. Let them carry on as normal a life as they can. Don’t discourage. There will be down days and off days, but live life like you want.”
“It's a pretty serious disease to diagnose a kid with and I think no one wants to give that sentence, so to speak, to a kid,” adds Raelene.
Evan has had most of his treatments completed at Stollery Children’s Hospital in Edmonton, and now takes Imuran daily after being on Remicade for a couple years. He also has a J-Pouch, having had his colon removed, and says he misses a couple days of school each month.
“It's not just a bathroom disease. He has a lot of fatigue, Raelene points out. “He’ll go through periods where he's got great energy and you'd never know he was sick. Other days, he’ll wake up in the morning and have spiked a fever, but the gut part of it will be fine.”
As the face of this year’s walk in Red Deer, Evan wants people to know that IBD, not to be confused with IBS, is more serious than most make it out to be.
“Some people just think of it as another one of those diseases, but it’s a lot more than that. Every disease is more than just another one of those diseases. If it’s classified as a disease, it's always pretty severe and it needs to be taken seriously, not as a joke.”
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