Cassie Porte changed overnight from an active, waddling toddler to a 20-month-old who could no longer walk.
One morning, in 2006, parents David Porte and Debbie Setton took Cassie out of her crib.
“And she wouldn’t walk anymore,” Porte said. “That was an obvious sign for us that something was wrong.”
One of Cassie’s knees was swollen, so it was x-rayed, tested for infection and scanned using an MRI. Finally, a blood test informed the family their youngest child had juvenile arthritis.
“The first thought for me was arthritis, but that’s impossible, she’s not two. Arthritis is what you get when you’re 82,” Porte said. “Even my wife, who’s a doctor, knew very little about juvenile arthritis.”
Cassie’s family and five others with children with juvenile arthritis established Cassie and Friends Society for Children with Juvenile Arthritis and Other Rheumatic Diseases in 2007, to raise money for research and care for juvenile arthritis. They started a Family Day in 2009 to create connections among parents and children affected by juvenile arthritis and to provide reliable information.
The society’s sixth Family Day happens this Saturday, Oct. 18, at TELUS World of Science.
“I felt like I wasn’t the only one who had arthritis,” now 9-year-old Cassie said of meeting peers with arthritis at Family Day.
Approximately 3,000 children in B.C. live with juvenile arthritis or other rheumatic diseases, an estimated one or two children at each school in the province. Children with juvenile arthritis face painful joints, loss of mobility and inflammation of vital organs. Symptoms and complications often mean restrictions on regular childhood activities.
Juvenile arthritis can strike children at any age, last weeks to months or be chronic and lifelong. Like lupus and Chrohn’s, juvenile arthritis is an autoimmune disease.
Cassie’s arthritis is chronic. From her knee, it spread to 16 joints.
“Both knees, ankles, fingers, toes, ribs,” Porte said.
“When she was little, she would have to take a warm bath every morning before she could even leave the house just to get her joints warmed up and loosened up enough that she could move around,” he said.
After multiple changes in medications, Cassie’s arthritis was under control until a year ago. One ankle has been causing her problems as of late.
“It’s a rollercoaster,” Porte said.
The keynote speaker at this year’s Family Day will talk about parenting a child with health issues and this address will be followed by a workshop.
“There’s such extra challenges that come with [juvenile arthritis] that isn’t in the What to Expect When You’re Expecting book,” Porte said.
The day will also feature workshops on juvenile arthritis and lupus and a youth panel on what to expect.
Porte anticipates parents will connect with one another over lunch about the roller coaster they’ve been riding.
“It’s not only about the child with arthritis, it’s ‘Oh, you have an older child, how are they reacting?’” he said.
While adults connect and learn, kids bond through activities organized according to age group.
“There’re some really interesting discussions with the high school kids about real issues that they’re confronting and they can talk to their peers about it,” Porte said. “A 14-year-old asking a 17-year-old what to do I do if I’m going on a date and I have a sudden flare in my arthritis… You wake up and you’re about to go on your date and your ankle hurts, what do you do? Do you go? Do you not go?”
Physicians, researchers and care teams from B.C. Children’s Hospital also attend Family Day, allowing parents to ask questions they can’t fit into or overlook during an emotionally charged 10 or 15-minute appointment.
The society’s Family Day was the first event of its kind in Canada and the only such event in B.C. Porte expects 200 children, family members, volunteers and clinicians to attend and he said families from as far away as Prince George, Vancouver Island and Kelowna have registered.
Family Day is meant for parents, grandparents, relatives, children with juvenile arthritis and their siblings.
“It’s particularly valuable for those that are more newly diagnosed,” Porte said.
Porte is proud the society he now chairs has raised more than $1 million since 2007, with a large portion of the money going to research.
For more information or to register for the free event, see cassieandfriends.ca.
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