Little Clark Burton is smiling again and his parents couldn’t be more grateful.
It’s been nine months since the Sarnia tyke became ill, morphing suddenly from an active three-year-old to a very sick boy.
“Overnight he just stopped everything,” says mom Ali Burton. “He’d lie on the couch and cry all the time.”
The little fellow who loved to swim and play hockey started asking his parents to carry him everywhere.
Initially, Ali and husband Brad suspected the flu. But a few days later they knew it was serious.
“It was very scary,” said Ali. “After all sorts of tests, the doctors couldn’t figure it out. He was getting progressively worse.”
Daily fevers accompanied rashes. Clark’s ankles, knees and hands were swollen and tender. He ate little; his weight dropped.
After several weeks the Burtons became desperate and in mid-December took their son to the Children’s Hospital emergency department at London Health Sciences Centre.
He couldn’t walk or open his hands.
“He was crying and screaming in pain,” Ali said.
Children’s Hospital admitted Clark immediately and told his parents he had either leukemia or arthritis.
“I burst into tears when I heard that,” said his mom. A week later a bone marrow biopsy ruled out leukemia. Clark began treatment for systemic juvenile idiopathic arthritis (SJIA), a rare and severe autoinflammatory disease in children. The cause is unknown.
“I didn’t even realize children can get arthritis,” said Ali. “It was really hard because you don’t want your child to be in pain. We began to worry about his future. It affects the whole family.”
The diagnosis led to a series of medications. All of his joints were swollen and his liver inflamed. Tears were constant.
Throughout the winter, specialists tried a series of various drugs to reduce the swelling and pain. Some of the daily injections stung so much Clark began having night terrors.
He was put on steroid infusions for a while. And then, doctors tried an immunosuppressive drug called Tocilizumab, and it worked.
Over six weeks the swelling and pain slowly diminished and for the past five weeks the Burtons have celebrated. Clark’s energy and smile have returned. He proudly shows off the two long bravery necklaces he earned at the hospital in London. Each of the beads represents one injection.
Clark, now 4, continues to visit Children’s Hospital twice a month for Tocilizumab infusions received intravenously over the course of an hour.
His parents are relieved to see him running around with his little brother again, and in two weeks Clark starts kindergarten.
“As far as we know he’s not in pain anymore,” said his dad, Brad. “And he’ll be completely off steroids very soon.”
“I feel like we’ve found a solution and we’re just so grateful,” said Ali.
The Burtons have made a video to educate others about systemic juvenile idiopathic arthritis and to tell Clark’s story. They gave it to the hospital, which used it to set up a fundraising page (https://bit.ly/2Mf9kx3) in support of the Children’s Hospital Foundation this month. August is Autoinflammatory Awareness Month.
Clark’s page has raised more than $1,400 but the Burtons hope more can be generated for the hospital’s Rheumatology and Child Life departments, where staff helped Clark cope with the many needles.
“We love them at the hospital,” said Ali. “They are so caring and have so much empathy for children.
“When we go, they come over to him right away to tickle him and joke around. He’s such a strong little boy. He’s not afraid anymore.”
To access the fundraising page, visit the Children’s Hospital London Health Sciences Centre website, click on “Donate Now,” then the personal fundraising page for Ali Burton, then click on Clark.