Max Labelle's face lit up when he used the Trexo Robotics exoskeleton for the first time.
Max, who is four, was born with hypotonic cerebral palsy, a lack of stability in his muscles that makes it difficult to sit and stand and walk.
The exoskeleton was a game changer. It supports Max's torso and helps him lift his legs as he practices stepping during physiotherapy sessions.
Those sessions were far from home.
Max and his family traveled from Maple Ridge, BC to the Canadian Center for Development in Calgary, where he experienced the exoskeleton for the first time. It is one of a handful of places in Western Canada.
His mother, Jamie LeBelle, says it didn't take long to notice a difference in Max. Within a week her posture improved and she started using her legs more.
“You knew right away that he needed to have it,” Lebel told CBC News. “He liked either the sensation or the movement himself to be as close as a normal child could walk and play.”
A 'gut punch' price
But that moment of excitement deflated when the label learned the cost of the equipment—$40,000. Amounts not covered by public health insurance.
“You become familiar with these pieces of equipment that are amazing,” she said. “Then you check the price and the price check is a gut punch.”
To help with costs, a relative started raising money for Max online. They are not the only ones who take that view.
Searching for “Trexo” on GoFundMe yields dozens of results from across Canada and around the world. Some families have managed to raise funds. Others have a long way to go.
For kids like Max, time is of the essence. There is a limited window when treatment is effective. According to Julie Rubin, executive director of the Canadian Center for Development, if a child with cerebral palsy doesn't learn to walk by age six or seven, it's unlikely.
“The brain has a lot of development to do until the age of five,” Rubin said. “So the more supports we can provide to a child, the more able-bodied they'll be on the path.”
About 85 children have had the chance to use exoskeleton at the centre. Some of them, including Max, traveled out of province for the occasion.
Trexo Robotics, the Mississauga-based company behind the exoskeleton, acknowledges the high cost of the equipment.
“It's a total game changer for these families, but it's an expensive technology, no question about it,” said Mark Roberts, Trexo's customer success manager.
“They are not everywhere that they need to be because they have to be paid for by families as opposed to the government.”
Robert's own son uses an exoskeleton. Like other families, she had to rely on funds to cover costs. His son now uses the device to walk kilometers to the farmer's market to pick up groceries at the end of the week.
As for Max's family, after the initial sticker shock they haven't been deterred by the exoskeleton's high cost. So far, they've raised about three-quarters of their $40,000 goal.
“I'm not going to stop until we get this device for her,” Jamie Labelle said.
