The author of a new children’s book says he hopes his debut publication will help spread the word about his medical condition, and bring comfort to those who may be dealing with the same affliction.
The 35-page book, The First Fire Dragon: An Autoinflammatory Adventure, comes from the imagination of nine-year-old Daniel Kinchlea of London, Ont., and will have its official release on Feb. 28, also known as Rare Disease Day.
Featuring illustrations by Filipino artist Ar-Em Bañas, the book follows the world’s-first fire-breathing dragon as he “faces the odds of dealing with the strange reality of his body’s response to the fire inside him, and the strange symptoms that ail him,” the book’s synopsis reads.
In the story, set in a time before it was known such creatures could breathe fire, the dragon gets sick and moves into town to look for a cure, Kinchlea told 980 CFPL’s The Morning Show with Devon Peacock this week.
“He moves past a farmer who’s scared of him, and then meets a troll who doesn’t believe him. Knights are too busy to work with him, (and) a witch tricks him into eating something that definitely does not work,” he said.
“Finally, a physician gives him a water stone that heals him, and then he flies around sharing his story, and filling their books with knowledge, (and) meets some friends and they all live happily ever after.”
The dragon draws parallels to the real-life journey faced by its young author, who, since he was a toddler, has struggled with a rare autoinflammatory disease affecting his innate immune system, or the immune system you are born with.
Complications from the disease have come in the form of prolonged fevers and rashes, systemic arthritis, and more. Since he was young, Kinchlea says he and his parents have been back and forth between London’s Children’s Hospital and Toronto’s SickKids for treatment, which includes a weekly injection he says is painful.
“Using my imagination has always been a source of escape from reality during painful procedures and long hospital visits,” he said.
“I wanted to help other people understand diseases like this, including people who had them, so they wouldn’t be as scared of it, which to me is very important, and that’s one of the reasons I do things like Rare Disease Day and Awareness Month.”
At one stage, Kinchlea developed Macrophage activation syndrome — a potentially life-threatening complication of systemic arthritis and other rheumatic diseases, according to the non-profit Arthritis Foundation.
“He had to be treated very quickly, and of course, his condition is very rare, and the doctors hadn’t seen much of this kind of disease before, so they had some treatments to try, but it was kind of a Hail Mary,” said Kinchlea’s mother, Chris, who helped him write the book.
“We were so blessed and lucky that it worked, but he’s had a lot of persistent issues as a result… He is nine now and has some further disease progression like systemic arthritis and interstitial lung disease.”
Chris and Daniel wrote the book during the COVID-19 pandemic, amid times when there was a lot of isolation, she said.
“To take something that was challenging, that was a challenging time, and then a lot of trips back and forth to the hospital and develop this concept that’s really fun and really creative…” she said.
“I’m just so, so proud of him, because he’s had to deal with some hard things like needles and trips to hospital, and he’s done something really amazing with it, and hopefully it helps a lot of other people too.”
More information about the book can be found at www.firstfiredragon.com.
March 3 is Corus Radiothon in support of Children’s Hospital. Details on how to donate can be found on the Childen’s Health Foundation website.
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