Hundreds of community members came together Saturday in an emotional show of support for a local French teacher recently diagnosed with ALS.
“I feel so loved and supported,” said Margie Johnson of the hundreds of people who showed up to support her this weekend at John McCrae Public School.
The event, which included a walk/roll along the river in Royal City Park and a silent auction, raised more than $17,000 for the ALS Society of Canada, far surpassing its $5,000 goal.
“It’s unbelievable,” the 49-year-old said.
Johnson has taught at John McCrae Public School for 20 years.
But in September, she had to stop.
“We went away in the summer and she thought she did something to her ankle before that,” said Shannon Baskin, Johnson’s wife.
An MRI showed a partial tear in her ankle.
“And then it just didn’t get better,” Baskin said.
Johnson developed drop foot in August, meaning she had difficulty lifting the front of her foot.
More symptoms started appearing in September, and she stopped teaching after her doctors said she should take some time to figure out what was going on.
Shortly after she developed drop foot in both feet, and by the end of the month she was being seen in an urgent neurology clinic.
The clinic was suspicious of Amyotrophic Lateral Sclerosis (ALS), a progressive, neurodegenerative disease where the nerve cells in the brain and spinal cord that control muscle movement die. It impacts one's ability to talk, walk, swallow and breathe.
It's a terminal disease with no known cure, and the vast majority of cases have no known cause.
After more testing, Johnson was given the official diagnosis in November 2023.
They moved into an accessible home that same month.
“She couldn’t climb the stairs pretty much when we left our house,” Baskin said. “It’s just been an uphill battle since.”
Johnson was using a cane to walk then. In December, she started using a walker, and in February she started using a power wheelchair.
“It’s just been so fast,” Baskin said.
When Baskin first learned her wife of nearly 14 years had ALS, she didn’t think it would progress so quickly.
“It’s been like four months. She can’t lift her left leg at all. Limited mobility in her right leg. Her speech has faded.
“It’s a lot, for somebody who travelled the world and was super active, had run a half marathon with me, climbed Kilimanjaro, went to Everest Base Camp,” she said. “She (was diagnosed) with ALS and life has changed.”
In early March, a GoFundMe was organized to help the family navigate additional accommodation Johnson needs as the disease progresses, and to help the future of their 10-year-old daughter, Sequoia.
It has already raised more than $42,000.
At Saturday’s event, the Rainbow Chorus – which Johnson is a part of – sang as she led everyone out of the school for the walk along the river.
“I’m not surprised about how many people have turned out today,” said Lindsay McCallum, a colleague of Johnson’s at John McCrae and a longtime friend who helped to organize the event.
“I felt like it was the best thing I could do to support them right now, because there’s not much you can do, other than be there emotionally and then also to help raise funds,” she said.
McCallum said Johnson was the “most dynamic, adventurous, really intentional” teacher.
“The kids loved her, they felt connected to her. They always wanted to be in her class,” she said.
“It’s the worst disease (happening to) the best person,” Baskin said.
