“Thank you for coming out.”
With those words, Frank Donkin welcomed walkers and supporters to Bradford’s second annual Walk for Chiari on Saturday.
When the Donkin family launched the Bradford walk last year, there were few people in the community who had heard of chiari (pronounced kee-ah-ree) malformation.
It was relatively new to the Donkins, too.
Their six-year-old son Mason had just been diagnosed with chiari malformation (CM), after years of struggling with a suite of symptoms and health setbacks.
CM is a structural defect of the skull that causes compression of the cerebellum, the part of the brain that governs balance, and the brain stem.
Symptoms can include headaches, severe muscle weakness and pain, nausea, insomnia, dizziness, and fatigue.
For four years, little Mason made the rounds of doctors, puzzled by his symptoms.
When the family got the diagnosis of CM, their first reaction, said mom Jennifer, was “What is that?”
Now they know, and so do hundreds, if not thousands of people who have been made aware through the efforts of the Donkin family of the relatively rare neurological condition that affects an estimated one in 1,000 people.
The Donkins set out to raise both awareness and funds, not only for Mason, but for the Hospital for Sick Children, and everyone with CM.
The second annual walk was a fundraiser for SickKids’ planned new Chiari Malformation Research Centre.
“It’s not just Mason who’s affected,” said Jennifer, at Saturday’s walk.
She spoke of “our chiari warrior, Steven,” another child with CM. “He wanted to come out and walk with us. Unfortunately, he’s not well enough. He has chiari, and he’s undergone two surgeries, and he’s still recovering from the last one.”
Jennifer also introduced Elena Bylykbashi, a young adult who will be undergoing her first surgery for CM in just days.
“That’s why we do these walks. There are many people who are affected,” Jennifer said.
The second Walk for Chiari took place at the west lawn of the Bradford West Gwillimbury Public Library, where pizza and ice cream sales, a candy store, kids’ activities, along with face-painting and temporary tattoos, were set up.
There was a fundraising silent auction, and a visit from BWG volunteer firefighters, who have made Mason and CM one of their charitable causes.
More than 80 walkers of all ages participated in the one-kilometre walk — joined by Mason and his family. Preliminary tallies suggest the walk raised more than $6,000.
Brianne Fodey thanked the Donkin family and every participant on behalf of SickKids.
“Chiari is under-researched and underfunded,” Fodey said.
The funds raised at the walk will make it possible for the hospital to provide “world-class care to those who need it,” she said, presenting a certificate of appreciation to the Donkins.
And BWG Deputy Mayor James Leduc thanked Mason for his courage.
“It’s the awareness you bring,” he said, not only to CM but to all rare diseases.
“Everyone seemed to have a great time,” said Jennifer after the walk. “It seems like a great turnout. It’s all worth it.”
And Mason was all smiles, as he played with friends, posed with firefighters, and walked for chiari.