The owners of a popular bakery in Ottawa’s east end say they’re grateful for the support they’ve been given by the community after they received news that two of their children have a rare disorder.
Myroslava Mykytyn and Isaac Fouchard opened the Black Walnut Bakery in Cumberland in 2015, much to the delight of locals, recalls Fouchard.
“I’d be out walking our dog and they’d be like, ‘Oh, you guys are the ones who are gonna open the bakery!” he said. “Right from the get-go the community was so excited about us being here, so the support was almost instant.”
Longtime Cumberland resident and co-chair of the Cumberland Community Association Yuri Locmelis is a frequent visitor to the bakery on Cameron Street near Highway 174.
“It’s a gathering spot and a place where everybody feels welcome,” said Locmelis. “You’re probably going to meet somebody in the neighborhood.”
Family hit by double SLS diagnosis
Mykytyn and Fouchard’s plans took a twist in 2019 with news that their then two-and-a-half-year-old son Caleb has a rare genetic disease called Sjögren-Larsson syndrome (SLS).
“We started to kind of notice developmental delays when he was around eight to nine months,” said Mykytyn. “It wasn’t until mid-2019 that we got the genetic testing back.”
According to the Sjögren’s Society of Canada, SLS affects approximately one per cent of the population, but is often undiagnosed or misdiagnosed.
The disease can cause physical and intellectual disabilities, as well as extremely dry skin, as it has in Caleb’s case.
SLS is genetic, meaning the family also faced the risk of the syndrome striking their two other children, daughter Evelyne and younger son Elias.
“We started to notice similar patterns with Elias so we went ahead and did the genetic testing as well,” said Fouchard. “In this case it [a positive result] happened a lot quicker because they knew what they were looking for.”
Caleb, now six, uses a wheelchair while his four-year-old brother Elias uses a walker. Their eight-year-old sister Evelyne is unaffected.
Receiving the two diagnoses in 2019, followed by the COVID-19 pandemic in early 2020, pushed the couple to consider the very real possibility of shuttering their bakery, Fouchard said.
“The news hits like a ton of bricks and your gut reaction is that we’ll have to stop everything, this is not going to work,” he recalled.
“The instinct was to shut down and put all of our energy and focus into helping them with their therapies,” Mykytyn added.
But the community had other ideas.
Community steps up
As Mykytyn and Fouchard began to share news of the diagnoses with the bakery’s patrons, a plan was hatched to lend the family a helping hand.
“I said, ‘We gotta do something for them,'” said Andy Etherington of the Cumberland Lions Club. “So along with the community association we ended up having this fundraiser back in September.”
The event at the nearby Cumberland Heritage Village Museum included treats, bouncy castles, tractors and vintage fire trucks, and resulted in a fundraising effort totalling $16,254.
“People just came and said, ‘I want to help,'” said Etherington. “The beauty of a small village is that everybody seems to get involved when something like this happens.”
It was nice that we were able to give to themfor once, after all the sweet treats they give us.– Yuri Locmelis, Cumberland Community Association
Yuri Locmelis of the Cumberland Community Association said it’s important for the Black Walnut Bakery owners to know the village has their back.
“We were going to help keep it open no matter what,” he said. “It was nice that we were able to give to them for once, after all the sweet treats they give us.”
Mykytyn said the money raised is helping pay for mobility devices for her two sons.
But just as important, she added, have been the relationships she’s established with folks in Cumberland.
“They came out to support our business during COVID and I felt that love,” she said. “But I never really expected anyone to reach out to us personally, so that was extremely touching.”
As for those thoughts of scaling down their operations, Fouchard said the support has helped them weather the storm.
“Being in the area we’re in, having that support from everyone around us and seeing how important the business is to the community, that’s actually the lifeline that will help us get through this,” he said. “They’re here to support us as a family.”
Another blessing has been CHEO, eastern Ontario’s children’s hospital in Ottawa, where both Caleb and Elias receive treatment and attend school daily, the family said.
And while SLS certainly affects their lives, the boys have a great deal in common with other kids their age, said Mykytyn.
“They’re classic brothers, always fighting and pulling pranks on each other or together on other people,” she said. “And they have their older sister who’s incredibly helpful, but she’s also their older sister so they drive her crazy, too.”