A young Stratford boy diagnosed with juvenile arthritis is fundraising and spreading awareness to support other children facing the condition.
Eight-year-old Jake Shiell was diagnosed with juvenile arthritis last October, exactly on his eighth birthday.
This summer, he’s set up Jake’s Lemonade and Cookie Stand, selling homemade, fresh-squeezed lemonade and chocolate chip cookies to support Cassie + Friends, a Canadian charity dedicated to supporting the pediatric rheumatic disease community.
So far, he’s just $11 shy of his initial $500 goal. But with weeks to go before an awareness walk in London, ON in September, Jake says he’s going to increase his fundraising target.
Jake’s journey began last September when he began experiencing unexplained foot pain.
Doctors initially thought the cause may have been cellulitis, but after treatment for that didn’t work, and the pain spread to Jake’s right knee, wrist and elbow, the family was eventually referred to a rheumatology specialist at London Children’s Hospital.
While waiting for the appointment, Jake continued to experience worsening pain and reached a point where he couldn’t straighten his elbow. He lost six pounds in a two-week period and began using a cane to even use the bathroom.
“It was not an easy thing to watch by any means, just steadily getting worse,” his mother, Krista Shiell, said.
In October, about five weeks after his symptoms began, Jake was diagnosed with systemic juvenile idiopathic arthritis (SJIA) – a subtype of juvenile arthritis that causes body-wide inflammation.
Juvenile arthritis affects about one in 1,000 children.
“It was a bit scary at first, but once they explained it, I was feeling better about it,” Jake said. “It’s good to know, if they were still testing and whatnot, it could’ve been a lot worse.”
Jake was started on a treatment regime that included steroid injections and anti-inflammatory medication. It had a positive impact, and within nine days, Jake went from struggling to walk to skating on ice.
He experienced another flare up in December, but today is in medicated remission. He’s required to take a biologic injection every two weeks for at least one year to manage the condition, but doesn’t currently require any other medications.
However, setbacks and additional flare ups, along with other complications, are not uncommon with juvenile arthritis.
“They (the doctors) said I could grow out of it, or I might not,” Jake explained. “I may have to live with it, just push through it.”
Today, Jake remains healthy and active. In the summer months, he enjoys tending to his garden and playing soccer. The eight-year-old plays hockey in the winter and is also interested in art – activities he’s now confident he can continue to participate in.
Even hand squeezing lemons for his lemonade – something not possible at the height of his juvenile arthritis flare up – is a reminder of how far he’s come.
Jake’s next lemonade stand will take place August 6 from 2 p.m. to 4 p.m. at the corner of Lloyd Crt. and Foreman Ave. He offers multiple flavours of homemade lemonade, including lemon-lime and strawberry, and is eyeing a new peach flavour for next month.
He plans to set up the stand at least twice more before the Cassie + Friends awareness walk in London on September 25, which he’ll attend with a childhood friend who was also diagnosed with juvenile arthritis.
Cassie + Friends has helped support him and his family through his arthritis journey.
“They helped me a lot along the way, they explained everything and just pushed me through,” Jake said. “They also share stories of other kids, which makes you feel like you’re not alone.”
Krista said the organization helps families cope, as well.
“The worst thing is when Jake was sick, because there was nothing you could do, and you can’t speed up time, you just more than anything want to take the hurt away,” she said. “But the support is the most important thing by far and having other moms and dads and families to talk to that have survived it themselves gives you a lot of help.”
Jake said he hopes sharing his story helps other families to keep an eye out for the signs and symptoms of juvenile arthritis and inspires those struggling with the condition.
“I wanted to help other kids to know that it’s OK to have arthritis, you just need to keep pushing through it,” Jake said. “If you’re sore that’s OK for a few days, if you have a flare up that’s OK, just deal with it, just keep going.”
The Shiell family said they’ve been overwhelmed by the initial support from the Stratford community and are incredibly thankful for those who have already donated.
For Krista, the journey from diagnosis, to fundraising, to the support of others for her son has been a roller-coaster of highs and lows and fears and joys that will impact the family forever.
“We are so proud of him,” Krista said. “They call them JIA warriors for a reason because that’s really what they are – they are brave, they are strong, they are strategic, and they put a lot of thought and heart into everything they do, and Jake does that in everything he does.”
