Emily, diagnosed at age 3. Never complained.
Emily was a happy-go-lucky kid and could always be found smiling and laughing. We felt lucky that she was so young when COVID came because we were able to spend time at home together, and because of her age, she didn’t know what was happening in the world around her.
When things started to normalize, we began to notice some behaviour and mood changes but attributed them to a recent move and her being nervous about starting school. However, three weeks into school, Emily started to occasionally walk with a limp. She never complained of pain and looking back, we think that she didn’t know how to describe what pain was.
One Sunday, she developed a consistent limp that seemed to worsen throughout the day. It’s when she developed a fever with the limp, while being on antibiotics for a viral illness, that we began to worry. That evening, we took her to LHSC Children’s Emergency. Doctors originally thought it was Toxic Synovitis and that the virus she had settled in her hip. They prescribed Naproxen and we waited to see if it worked. But it didn’t. After her follow-up with Orthopaedics and having elevated blood work, she was referred to Rheumatology, and within 7 weeks, she had a diagnosis of Juvenile Idiopathic Arthritis (JIA). Just days before her 4th birthday, she had fluid withdrawals and steroid injections in her knees and one ankle.
Since then, she has been taking methotrexate weekly, and although we do notice some side effects (sore stomach, an occasional sore, fatigue, and mood swings) she has been flare-free since.
We are grateful for her team at LHSC and for organizations like Cassie + Friends. After her diagnosis, anytime she got sick, had a fever, bruise, etc we would email her team for assistance. They were always reassuring and helped alleviate any stress or worries that we had.
Attending Cassie + Friends Family Day this year was monumental in our journey. Emily connected with peers who felt the same as her, and her little sister was able to be included and have fun. Her father and grandfather played in the hockey game, and we connected with other families and got a better understanding of the disease.
Together, we’ve created a new normal that includes many appointments, and lots of love, patience, and understanding.
