Ottawa

Village steps up to help bakery owners through health challenges

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.

Family behind Black Walnut Bakery in Cumberland hit by double diagnosis of rare genetic disease

After their sons were diagnosed with a rare disease, owners of this Cumberland bakery were supported by their community

12 months ago
Duration 2:39
Isaac Fouchard and Myroslava Mykytyn are the owners of Black Walnut Bakery in Cumberland Village. Two of their children, Caleb and Elias, were diagnosed with Sjogren Larsson Syndrome, a rare genetic disease. Initially, Fouchard and Mykytyn said they were worried about keeping the bakery going as they focused on their children’s care, but the support from their Cumberland community has been “immeasurable.”

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."

Isaac Fouchard and Myroslava Mykytyn inside their Black Walnut Bakery
Isaac Fouchard and Myroslava Mykytyn say they considered slowing down their operations at the Black Walnut Bakery in Cumberland following the diagnosis of SLS for their two sons, but kept the bakery going thanks in large part to support from the community. (Jean Delisle/CBC)

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."

The Black Walnut Bakery viewed from outside
The Black Walnut Bakery is just off Highway 174 in the village of Cumberland. (Jean Delisle/CBC)

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.

Evelyne Fouchard and her younger brother Caleb in their parent's Black Walnut Bakery
Caleb Fouchard, 6, and his sister Evelyne, 8, hang out in their parents' bakery in Cumberland. (Jean Delisle/CBC)

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.

Caleb Fouchard
Caleb was diagnosed with Sjögren-Larsson syndrome (SLS) in 2019. He attends a school run by CHEO, eastern Ontario's children's hospital in Ottawa. (Jean Delisle/CBC)

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.

The Fouchard-Mykytyn family receive a cheque during a fundraising event.
The Cumberland Lions Club and the Cumberland Community Association helped raise more than $16,000 for the Fouchard-Mykytyn family. (Steve Lecomte)

"P​​​​eople 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 them for 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."

Elias Fouchard
Like his older brother, Elias Fouchard, 4, was diagnosed with SLS and attends an elementary school run by CHEO. (Jean Delisle/CBC)

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."

Myroslava Mykytyn holds her son Elias with her husband Isaac Fouchard (second from right), Andy Etherington (middle) and Yuri Locmelis (right).
Mykytyn, holding Elias, and Fouchard, second from right, say they're grateful for support from the community in Cumberland, notably Andy Etherington of the Cumberland Lions Club, centre, and Yuri Locmelis of the Cumberland Community Association, right. (Jean Delisle/CBC)

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."

Corrections

  • A previous version of this story conflated statistics on the prevalence of Sjögren-Larsson syndrome with data on Sjögren's syndrome, a different disorder.
    Dec 10, 2023 9:13 PM ET

ABOUT THE AUTHOR

Giacomo Panico

CBC Reporter and Host

You can reach Giacomo by email [email protected].