Mason Donkin and his family, friends and supporters were out in full force on Saturday for the third annual Walk for Chiari (pronounced kee-ah-ree) – raising awareness of chiari malformation and funds to support critical research at the Hospital for Sick Children.
Chiari malformation (CM) is a relatively rare neurological condition that affects one in 1,000, according to statistics. For those with CM – like seven-year-old Mason – the skull doesn’t have enough room for the brain, and compresses both the cerebellum, the back portion of the brain that governs motor control, and the brain stem.
Hence the chiari slogan: "Too much brain to contain" – but the symptoms are no joke.
CM can cause excruciating headaches, severe muscle weakness, nausea, dizziness, fatigue, numbness, insomnia, even a tendency to catch more than the average number of colds and ear infections.
It’s a suite of symptoms that may mimic other illnesses, making diagnosis of CM difficult. Every day can be a battle – but Mason, said mom Jennifer, is a “chiari warrior.”
On July 13, Mason and other chiari warriors came out for the walk, starting outside the Bradford West Gwillimbury Public Library. The annual event included face-painting and a craft centre, a fundraising barbecue courtesy of Harvey’s in Bradford, funnel cakes, inflatable play structures for the kids, a silent auction, and music provided by Wired for Sound DJ services.
“Every year, it’s a little bigger, a little more organized,” said dad Frank Donkin. “It’s always an event we look forward to every year. It’s very positive… a good way of bringing the community together.”
Mason, his face painted, ran to greet the BWG firefighters who have been among his biggest supporters since he was diagnosed three years ago. Firefighters were among the first to contribute to the family’s fundraising efforts for SickKids Foundation, hoping to establish a Chiari Research Centre at the Toronto hospital.
He also teamed up with fellow chiari warrior Steven Spice, who wanted to come to last year’s walk but was still recovering from his second surgery. This year, Steven was part of the team.
One of the youngest participants was six week old Macie, whose mom Madison was diagnosed with chiari malformation in 2017.
“I had symptoms all my life, but we never knew what it could be,” she said.
Sara Nieman of the SickKids Foundation thanked everyone who came out for the 2019 Walk for Chiari.
“You should all truly be so proud of the sense of community and what you’ve built today,” said Nieman, praising the young chiari warriors as “truly heroes,” and the donors for helping turn “a lab discovery into a life-saving procedure. You are standing here today for better treatment, and better care for children with CM.”
Mason suffered for years before he was diagnosed with CM. He is still undergoing testing to determine how much of his condition is a result of chiari and how much related to another genetic disorder before doctors determine the best course of treatment.
“He’s a fighter,” said mom Jennifer. “I am just overwhelmed with what has happened the last three years – the support we get from friends, family and the community.”
As of July 13, fundraising had reached $13,000. The Donkin family is hoping to raise $50,000 for the new Chiari Research Centre at SickKids.
Signs on the tents and carried in the walk reflected Mason’s fighting attitude: “Chiari is just a bully who I beat up every morning when I get out of bed.”
