Zachary Hoskins might not be able to kick a soccer ball, but get him on a ski jump and he'll soar like Eddie the Eagle.
Six-and-a-half years after he was diagnosed with juvenile idiopathic arthritis (JIA), Hoskins appears to be like any other active 10-year-old boy. He loves downhill and cross-country skiing and is an avid downhill mountain biker. But the pain of living with arthritis is never far away, as he was reminded after one rough landing off the jump he'd built out of snow at Otway Nordic Centre.
"If I do it for a couple of hours it really hurts while I'm skiing," Zachary said. "I've just learned to ignore it, because I've had it so long. When I was younger, like when I was seven, it was harder to ignore because I felt it more places than just my ankles."
JIA is one of the most common childhood diseases, affecting one in 1,000 Canadians under the age of 16.
The disease is a joint disorder that stems from an overactive immune system, causing inflammation of the joints that can lead to intense pain and the eventual breakdown of those joints.
Early diagnosis is key in improving long-term prognosis. Among the early warning signs of JIA are chronic anemia, skin rashes, sore or stiff neck, and swollen joints. For Zachary, it started before his second birthday when he complained of a sore neck, but he wasn't diagnosed with arthritis until he was three and a half.
There have been significant advances over the past decade in developing drugs to treat JIA but some of the better ones weren't available when Zachary was first diagnosed. Since last fall he's been taking new medication intravenously every three or four weeks. While he's responded well to the new medication, his disease has never gone into remission.
"Kids who are being diagnosed with systemic [arthritis] are going on to this drug immediately and it's having a huge impact on their remission statistics," said Zachary's mother Alison.
"It's very encouraging. Without [the new drugs] kids are essentially
bedridden."
The drugs Zachary takes to reduce inflammation also compromise his immune system, leaving him more vulnerable to common infections or viruses. At age 6 he spent a week in that hospital when a systemic flare-up of the disease caused inflammation of the lining around his heart.
The disease damaged the growth plates of his bones, which has limited Zachary's height development. His left ankle has degenerated to the point where he no longer has the ability to rotate his foot to either side. He wears an orthotic brace on his ankle that restrict sideways movement to decrease the pain and limit further damage, and that helps him keep up to his seven-year-old brother Jacob.
"Zachary is an amazing kid - he's a 10-year-old kid who has never known life before arthritis and he's pretty much stopped at nothing," said Alison.
Zachary is a founding member of Cassie and Friends Fund for Children with Juvenile Arthritis, a program started in 2007 by the B.C./Yukon division of the Arthritis Society to create awareness and raise money for research through sponsored family events and educational forums.
"Going to [the events] just makes me feel that I'm not alone," said Zachary.
As a Grade 5 student at St. Mary's school, Zachary has been learning about how Terry Fox and his cross-Canada run helped increase the profile of cancer research and he asked his mother if somebody was going to do something similar for for JIA.
"We do the Terry Fox Run and Jump Rope for the Heart at my school but there's nobody at my school with cancer and nobody at school with a stroke," Zachary said.
"I sometimes wonder why they don't do one for arthritis."
