Juvenile arthritis organization launches national mental health strategy to support suffering youth

Juvenile arthritis organization supports mental health A Windsor boy was recently diagnosed with JIA and struggles with both main and mental health as a result. Rich Garton reports.

Sunday marks National Child and Youth Mental Health Awareness Day and it’s hitting close to home for an Amherstburg family.

Eleven-year-old Kaese Faber was recently diagnosed with juvenile idiopathic arthritis (JIA) and struggles not only with the pain but also the mental health aspects of the debilitating disease.

It all started a year ago while playing pick-up soccer with his sister.

“I stepped weird and I kind of fell on the ground and it like, hurt a lot,” recalls Kaese. “And then after that, my knees started to swell up.”

After a series of x-rays, MRIs, and having his knee drained twice, he was referred to a rheumatologist in London, Ont.

“It was three months of trying to figure out what is wrong with his knee. It was the size of a balloon,” said Kaese’s father, John Faber.

The diagnosis of juvenile arthritis meant Kaese couldn’t do many of the things he loved, like travel soccer, hockey and track and field. He struggled with the task of walking up the stairs at home.

“An 11-year-old should be able to go out and ride his bike, have fun, go play sports, do all of these things and to see your child go from that kid to not being that kid anymore, you know, it's going to affect them massively,” said John.

The treatment is a drug called methotrexate which works well to reduce swelling in the joints — but has side effects like depression and anxiety. Kaese is especially triggered when getting weekly injections.

“You learn that this isn't him. This is something else this is driving him to this,” John said, noting he developed a needle phobia that made treatment difficult.

During Kaese’s treatment journey, the family connected with Cassie + Friends, a foundation dedicated to helping families suffering from juvenile arthritis and other rheumatic diseases of childhood like lupus through research, education and the often overlooked need for support.

“One of the most challenging aspects of these diseases are that sense of being alone and ‘I'm the only one,’” said Jennifer Wilson, the executive director of Cassie + Friends. “So for a kid to meet another kid or a parent, to be able to talk to another family that's going through the same thing is truly life-transforming.”

On Sunday, Cassie + Friends announced a new partnership with Brain Canada Foundation. Years of fundraising through walk-runs across Canada have allowed the organization to invest $480,000 into a national youth mental health strategy.

”And as well we're launching a brand new youth mentorship program so that no child has to live in pain alone,” said Wilson.

It fills a big gap for 24,000 youth and teens in Canada just like Kaese who live with the disease. Three in 1,000 kids will develop JIA in their lifetime.

“It’s very helpful to get to talk to people. It allows me to let it all out and it just makes me feel better,” said Kaese, who no longer “bottles it up.”

Kaese also lives with the knowledge that his arthritis could flare up at any point and requires continuous medication and mental health support.

But a year after the incident that started it all, Kaese is in remission and is once again playing sports including a recent track meet at school.

“I am proud to say I got a second-place ribbon in shotput,” Kaese said with a proud grin. “So I'm very excited.”