Juvenile arthritis awareness
Kids on the Block uses a puppet show to teach kids about juvenile arthritis. (photo from Cassie and Friends)
Juvenile arthritis (JA) affects three in 1,000 kids in Canada, making it one of the most common chronic conditions affecting children today. Yet, JA is still relatively unknown and often misunderstood.
According to Jennifer Wilson, executive director of Cassie and Friends Society for Children with Juvenile Arthritis and other Rheumatic Diseases, “Arthritis has been mislabeled as ‘an old person’s disease,’ leaving kids who suffer from JA misunderstood for their differences and the disease’s complications.”
In 2006, David Porte and Debbie Setton discovered that their then-20-month-old daughter Cassie had JA.
“When Cassie was not quite 2 years old, she woke up one morning and couldn’t walk,” recalled her mom, Debbie. “I took her to the children’s hospital and, after X-rays, blood work and several visits by specialists over the next few weeks, we received the diagnosis of JA, a painful, lifelong autoimmune condition.
“Despite being a physician, I remember feeling very scared and alone, especially as Cassie’s disease progressed to involve more and more joints. Both David and I struggled to find information and support to cope with Cassie’s condition.
“About six months after Cassie was diagnosed,” she said, “David entered the Scotiabank Charity Challenge Run. We were overwhelmed with the support we received from family and friends, raising over $18,000 in a few weeks. We decided to do something long-lasting and create a charity that would help other kids and families like us.”
Debbie and David named the Vancouver-based charity Cassie and Friends, and it has been working to transform the lives of kids and families affected by JA and other rheumatic diseases locally and across Canada.
“Cassie’s disease has followed a pretty typical course of flares and remissions,” said Debbie. “At her worst, she had 16 joints affected (knee, ankles, toes, wrists, fingers). During the flares, she was unable to do the things she loves, like dance. In fact, at times, she found it hard just to walk or hold a pen. Thankfully, she is in a remission phase right now, on two different injectable medications to control the inflammation.”
According to Debbie, Cassie sometimes gets sad or frustrated because of her arthritis or its treatment. But, for the most part, Cassie is exceptionally positive and does not let her arthritis stop her. Further, Cassie’s condition has had an impact on her older brother, Ben, making him a more empathetic person after observing his sister’s struggles, said his mom.
“In the beginning, it was difficult for David and me, not knowing anyone else with a child with JA,” said Debbie. “But, now we feel like we have a whole community around us to share in the ups and downs of Cassie’s disease.”
To help kids learn about JA and other rheumatic diseases, David and Debbie created Kids on the Block (KOB) in 2009. And the KOB puppet show has been traveling, mainly around Metro Vancouver, to raise awareness about childhood arthritis, and to educate students and teachers about the issues these children face.
“The life-sized puppets – decked out in Cassie’s toddler clothes – act like real children,” said Debbie. “They help students understand what it’s like to live with JA and their skits illustrate some of the challenges a classmate with JA (or really any disease or challenge) might be facing: pain, isolation, depression and mobility challenges. Students have the chance to ask the puppets questions at the end of the performance. The puppets also help children feel positive about themselves, accepting individual differences and learning valuable personal skills.”
The first-ever performance of KOB was at Vancouver Talmud Torah, when Cassie was in kindergarten. With Cassie about to graduate from the school, the show was brought back for another performance earlier this year. Cassie suggested it would be more special and have a greater impact if she were to introduce the program with her own story. At the show, there were two other children in the audience with either JA or another rheumatic condition.
“It was my suggestion to bring Kids on the Block back to VTT on Jan. 24, 2018, for the younger kids, including my Grade 1 buddy,” said Cassie. “It was fun to introduce the puppet show to the kids. They all know me and I could explain it to them in an easier way, because I am a kid and they are, too.
“I also really enjoyed watching the show again, because I didn’t remember it from kindergarten. After I had done the introduction, I also got many compliments on it because it was in the weekly email.” (Cassie’s presentation can be seen on YouTube.)
“Arthritis in kids is much more than aches and pains,” said Wilson. “JA is a chronic autoimmune disease characterized by uncontrolled inflammation and pain that can occur in any and often several parts of a child’s body. Children with JA will spend countless hours treating their condition and are often confined to the sidelines in sports, school and even life – especially during painful flares.
“For many children,” she said, “JA will also involve complex medical interventions, such as joint replacements, surgeries and aggressive, immune-suppressing medications, like chemotherapy and biologics. There is no cure and there are few treatments that are safe and specific for a growing child. Sadly, that can lead to feelings of embarrassment, social exclusion and even bullying … for a child who is already dealing with a painful, chronic and sometimes invisible disease.”
KOB is 100% free to schools and is intended for students in kindergarten through Grade 4. The show travels to 40 to 50 schools in British Columbia every year. It is supported in part by the sponsorship of Mardon Insurance and Gore Mutual Insurance Foundation.
According to Wilson, Cassie and Friends is the only charity completely dedicated to kids and families affected by juvenile arthritis and other rheumatic diseases. For more information, visit cassieandfriends.ca or email [email protected].
Rebeca Kuropatwa is a Winnipeg freelance writer.