The mother of an eight-year-old might hope to hear that her child excels in math or science. Perhaps she'd like to know that her child is a sports star or well-regarded by her peers. Instead, Dina Chan was told in 2019 that her daughter Jayna might only have two years left to live due to complications from systemic juvenile idiopathic arthritis (sJIA). Jayna was diagnosed at age three.
"I had never heard of arthritis in kids, nor did I know it could happen," says Dina. "My knowledge of arthritis was limited to its effects on older adults."
Following Jayna's diagnosis was a treacherous ordeal that nearly took her life. With Jayna healthier now than she has ever been, mother and daughter are stepping up — and walking the runway — in support of arthritis awareness. They will participate in Fashion on Fire, Arthritis Society Canada's event that brings fashion and philanthropy together to rewrite the narrative around a long-misunderstood disease. It takes place in Toronto on May 29.
Signs that couldn't be ignored
Jayna was three when her symptoms began in early 2014 — lethargy, high fevers, a rash and an ear infection. She soon developed a limp, refused to climb stairs and had a decreased appetite. Visits to the emergency department proved unproductive. Advil, Tylenol and antibiotics were prescribed, and Dina and Jayna's father, Justin, were told the ailments were normal for flu season.
Call it mother's intuition, but Dina was unconvinced.
The Ottawa-based family was visiting Toronto in March 2014 when Dina gave SickKids a try. Bloodwork revealed high levels of inflammation, and a diagnosis of sJIA was confirmed. Juvenile idiopathic arthritis is the most common type of arthritis in children and teens, while sJIA is a rare and serious subtype, impacting the joints and other parts of the body, including the liver, lungs and heart.
It didn't end at sJIA for Jayna. She was also diagnosed with Macrophage Activation Syndrome, a life-threatening condition that causes severe inflammation. It presents in about 10 per cent of children with sJIA.
A revolving door of drugs and diagnoses
Jayna's first treatment plan included a biologic, or an everyday injection, and a strong steroid.
"Yes, a needle every day for a three-year-old," Dina emphasizes. "This was painful for her and left us in tears most nights, knowing we were the ones hurting her when all we wanted to do was take her pain away."
After little to no progress, doctors recommended infusion, whereby medication is delivered directly into the bloodstream. Dina, a federal government employee, had to shuffle around shifts to bring Jayna to these four- to six-hour appointments.
Jayna remained unhealthy. She put on weight due to the drugs, her mobility declined as her joint pain increased and the fevers persisted. Doctors suggested expert evaluation at the National Institute of Health in Maryland, where tests confirmed interstitial lung disease. Often associated with sJIA, the disease causes scarring of lung tissue and makes breathing difficult. "Another diagnosis! Our hearts sank," Dina says.
With an extra diagnosis in tow, the Chans headed home. More drugs to combat Jayna's arthritis symptoms were prescribed, but her respiratory issue became the primary concern.
When dire becomes potentially deadly
Due to interstitial lung disease, Jayna's breathing was increasingly strained — so much so that she was put on oxygen. Further medication was ordered, but Jayna continued to deteriorate as her oxygen levels dropped.
"It was 2019 when we were given two choices: a lung transplant or a bone marrow transplant," Dina says. "We were told she might only have two years left. We could not fully understand what was happening nor comprehend how sick our daughter was. There was a war raging on, and we were terrified."
Dina and Justin were told to consider palliative care to make Jayna's remaining time as comfortable as possible. As they grappled with the reality that they might lose their daughter, they committed to a bone marrow transplant, which Jayna underwent at SickKids in 2020.
At long last, a breakthrough
Jayna and Dina stayed in Toronto for a year after the procedure. Initially, Jayna did not respond. Her organs began to fail one by one, and Dina says her family clung to prayer and hope.
Eventually, Jayna improved. As of 2024, her arthritis symptoms have largely dissipated and she is off oxygen. She is back in school after missing most of Grades 4, 5 and 6, and is beginning to feel comfortable navigating her teen years.
With her daughter the healthiest she has ever been, Dina shares advice with parents whose children show similar symptoms to Jayna's: advocate to get the right tests done.
"It's an invisible disease, but it's in the bloodwork. Without it, you can't get a diagnosis. Without a diagnosis, you can't start your kid on treatment," she says. She adds that parent support networks are helpful.
Together, Dina and Jayna will raise the profile of childhood arthritis as models in Fashion on Fire.
"Greater awareness and understanding can go a long way to stop the stigma. Arthritis can affect anyone of any age, and symptoms can be very different from person to person," says Dina. "Jayna is still monitored as we never know when this sleeping dragon may wake, but we are finally at a place where we can see a future for our daughter."
Need a perfect Mother's Day present? Purchase a ticket for you and your mom to see Dina and Jayna walk the runway at Fashion on Fire on May 29, Arthritis Society Canada's sparkling evening where we’ll douse the flames of arthritis with the power of fashion.