How a Quebec family struggling with their baby's illness came up with a way to help others
Johanne Long put her sewing skills to good use in response to a pressing need
Olivier St-Ours has spent more time in Montreal Children's Hospital than any newborn should.
His mom, Liliane Larocque, remembers the day in August doctors told her they had found a tumour in Olivier's brain.
"It was horrible," she said, clutching her tiny son tight to her chest.
"You can't imagine your four-month-old baby will have a brain tumour. You never think that it would be you. You always think would be someone else."
Olivier's diagnosis turned the family's world upside down.
Larocque and Olivier take the Mercier Bridge from Châteauguay several times per week for treatment or appointments.
He is undergoing chemotherapy and surgeons have operated on his brain. He also has difficulty eating.
Doctors had to perform a gastrostomy, which involves creating an opening in his stomach where food enters through a tube inserted into what his doctor calls a button.
That created another problem: the button can be dangerously attractive for a child Olivier's age.
Hussein Wissanji, one of Olivier's doctors, said it's crucial that the button doesn't come out but it's hard to avoid.
"Kids will be kids. And it can be a real stress for the family," he said.
Larocque had a better idea. She wanted a protective garment to cover the apparatus.
They are available online, mostly from the US or Europe, but cost well over $100.
Larocque texted one of Olivier's great aunts, a seamstress, and asked her if she could make her own version.
Meeting the demand
After getting a few ideas from Larocque and checking online, Johanne Long got busy in front of her sewing machine. A few hours later, she delivered the first belt to Larocque.
"She took me in her arms and cried," Long said.
Long didn't stop there. She asked Larocque how many other children have gastrostomies. It turns out, quite a few: close to 40 per year at the Children's alone.
Long wasn't fazed.
"I cannot imagine a parent not being able to sleep because their child has to eat during the night. I want to bring some relief to the parents and kids," she said.
"I'm going to do that for all kids who have this operation."
Now, a team of volunteers meets in Long's Longueuil basement and churns out bins full of belts and drops them off at hospitals across Quebec. She calls the project Ceinture Olivier.
A cheaper alternative
Parents can buy the belts for a fraction of what they'd pay if they ordered them online. She says most of the money pays for supplies and what little is left over helps defray some of the costs associated with Olivier's care.
"I don't do that to make money," she says. "I do that for kids because it is very important the kids have a good time and play."
When Wissanji heard about the gesture, he had tears in his eyes.
"It's inspirational to see that they find the strength to think about other people and how they can help while having to cope with all their stress," he said.