Attacking Barriers: Fencing with JIA

For a lot of kids, being diagnosed with a rheumatic disease, like Juvenile Arthritis (JIA), means adapting to a whole new way of life. Today, we’re honoured to share the story of Paula and her son Simon, who was diagnosed with Enthesitis-Related Arthritis (ERA) two months ago. While navigating this new diagnosis, Paula shares how she (and her oldest son!) were able to help advocate for accommodations for Simon so he could continue to participate in the sport he loves.

Simon has been a member of the Manitoba Provincial Fencing Team since 2022, though fencing has been a part of his family for more than a decade. Simon’s older brother, Matias, is a fencer too.

With his new diagnosis, the hardest part for Simon was not being able to attend his daily training sessions. Paula shares, “He was depressed and angry and in so much pain that it was hard even to do normal activities. Seeing him angry while his brother was going to training was so hard.”

It was Matias who started the conversation about Simon’s situation. When the head coach asked why Simon wasn’t attending training, Matias shared what the family was going through. Paula shared, “It was my oldest son, actually, and his willingness to talk so openly that moved me to send an email to the coach.”

Inspired by Matias’ openness, Paula adapted the Cassie + Friends school advocacy letter template to explain Simon’s situation. She emailed the letter to the coach with the subject line, Simon’s Fencing Situation.

The coach responded immediately, offering encouragement and sharing that his wife also lives with arthritis. “I asked for an in-person meeting to discuss any possibility of Simon going back to training for his mental health. At the meeting, the coach explained how important movement and community were for Simon, especially during this difficult time.”

Together, they came up with a plan. Simon’s coach suggested that he participate in “Technic” training exercises, which are low-impact but great for improving his fencing technique. The coach also suggested that Simon join the training sessions for the sense of community and help with various things like refereeing his fellow fencers.

With these accommodations in place, Simon returned to the sport he loves. Although he can’t train daily, he’s been able to attend practices and even participated in a tournament a few weeks ago! Simon competed in the bouts and the team would check in often to see if he was feeling well enough to do the next one. The community has been so supportive of Simon, and he comes home so happy from training, even when he needs a cold bath to recover.

Simon’s story is a powerful example of how advocacy, support, accommodations, and community can make a difference for a child navigating JIA. With support from Matias and the head coach, Paula was able to find a way to help Simon stay involved in fencing, a sport that brings him joy and a sense of belonging – which are crucial to youth mental health.

If your family is navigating a similar journey, we’re here to help. Cassie + Friends offers resources, templates, and support to help you advocate for accommodations that work. If you’re a youth navigating a rheumatic disease, we’re here for you too! Check out our youth programming, including our peer mentorship program, where you can connect with other people who just get it.