For Lillian – Our Rheumatic Disease Warrior

Our journey with Rheumatic Disease began in June 2022. After 11 days of fever, Lillian, then just shy of her 3rd birthday, was seen, diagnosed, and treated for Incomplete Kawasaki disease at CHEO (Children’s Hospital of Eastern Ontario). Luckily, she responded to the IVIG treatment and was discharged after four days in the hospital with no signs of organ damage or lingering side effects. We were told that Kawasaki Disease was a single episode of acute illness and Lillian would be able to live a life like her peers.

We enjoyed a healthy few months, until the Fall of 2022 when viral illnesses surged as the Covid pandemic waned. Our household succumbed to our fair share of illnesses over a few months, but we started to notice that Lillian’s period of recovery was different from her little brother’s. After the initial acute illness was over, Lillian would have multiple days of fever, or develop an ear infection. Though we suspected something was abnormal, with the presence of ear infections, many physicians dismissed our concerns. It wasn’t long before another virus hit and the infections returned, preventing us from investigating.

Since Lillian had a history of Incomplete Kawasaki, our radars were heightened to Rheumatic Disease. Additionally, I had done some of my professional training at the SickKids Rheumatology Department and in the back of my mind wondered if a more significant workup was warranted.

In February 2023, Lillian struggled to recover from another virus, once again. After multiple days of low-grade fever and another ear infection that was difficult to treat with antibiotics, Lillian’s disease presented itself to us. She woke up from a midday nap covered in a strange rash, with a swollen face, complaining of pain in her legs and unable to bear weight. The presentation was atypical, but over time it became more clear that it was likely Systemic Juvenile Idiopathic Arthritis (SJIA), a rare subtype of JIA.

Daily, Lillian experiences low-grade fever, a full-body rash, and low energy. Fortunately, at this time, she does not experience much pain. Lillian has tried many different medications and treatments. While nothing has successfully moved the disease into remission, we have achieved more symptom control and Lillian is happy and feels good much of the time.

The uniqueness of our story and Lillian’s disease picture meant that our family did not fit into most of the typical support networks, and we spent much of this diagnostic period scrambling for information and comfort from anyone who had walked a similar path. This all changed when we were introduced to Cassie+Friends by our Rheumatology team.

We joined our first Ottawa Run in May 2023 while the diagnosis was still fresh and found comfort walking alongside our medical team and the Ottawa community. Our connection to Cassie + Friends deepened when they paired us up with another family who had experienced a similar journey, and finally, when we were immersed in all that this organization had to offer at Family Day in May 2024.

In deepening the connections to this community, I realized how isolating our journey had been to date, and how empowering it was to surround ourselves with others who had been through a similar experience. It is important to us that, as Lillian ages, she realizes that she is not alone in this journey and that she is surrounded by a strong community that will advocate for children like her to live their lives to the fullest while battling rheumatic disease.

We are excited to run for Cassie + Friends this coming weekend, now over a year into our journey with Rheumatic Disease, and with a wider understanding of what this community means.