“Xa̱lp̓ida’s,” says ten year-old Mackenzie to Nova, her English Cream Golden Retriever. It means, ‘Turn around’. Not many dogs are learning in Kwak̓wala, but this is a unique friendship.
Three years ago, when she was seven years-old, Mackenzie’s family started fundraising to get her a service dog.
Mackenzie suffers from Cyclic Vomiting Syndrome (CVS) and has since she was two years old.
CVS, a rare disorder with sudden attacks—also called episodes—causes severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. According to the National Organization for Rare Disorders, CVS can affect as much as two per cent of the population.
The occurrences fall into two categories: regular patterns or unpredictable episodes.
“Mackenzie is a sporadic kind of kid,” says Carla Voyageur, Mackenzie’s mom. “She’ll get an episode of vomiting that can happen from two hours to twelve hours.”
Mackenzie has suffered with CVS her entire life, but only received a diagnosis four years ago.
Life was much more difficult for Mackenzie when she was a baby, her mom says, because she couldn’t communicate how she was feeling.
Struggle for answers
Mackenzie is Musgamagw Dzawada’enuxw and Nisga’a, and she grew up in her traditional territory in Kingcome Inlet, an isolated fjord carved into the Coast Mountain range of mainland B.C. Her community is accessible by boat or plane.
But it wasn’t just distance that made access to medical professionals difficult. Voyageur says she didn’t know if her family’s struggle for answers had anything to do with the colour of their skin, if it was due to general confusion about the disease or whether someone was just having a bad day.
“There’s issues of racism, and stereotyping, and people being ignorant to a condition,” she says. “You know, not very many professionals take well to being educated by an everyday person about a health issue.”
Getting access to care is extremely difficult for people living in remote communities, and community members rely on an approval process to access services, Voyageur explains.
It was anything but easy.
It takes a village
Voyageur first found out about service dogs when the family lived in Winnipeg during what she calls a “really bad year.” Mackenzie had more episodes during that time, triggered by the stress of the move, her mom believes.
“She was absolutely devastated one day and she was crying and she’s like, ‘I just want my life back’. I was heartbroken that my child’s quality of life was so poor that she longed for a time she had a better life.”
Mackenzie was six at the time.
Voyageur researched solutions tirelessly and came across Manitoba Search and Rescue [MSAR], and saw that they work with Indigenous people and provide custom service dog training. The cost of a specially-trained dog can be a minimum of fifteen thousand dollars, with a five thousand dollar deposit.
At the time, there was no way the family could afford it. They returned to B.C., landing in Comox with Voyageur’s grandparents and continued the conversation about a potential service dog for Mackenzie through an introduction to VI K9, a similar organization to MSAR located in Brentwood Bay on Vancouver Island, which custom trains service dogs for a wide range of support needs.
“I thought, maybe the dog could learn to alert us to when Mackenzie’s having an episode,” says Voyageur.
In her research, she learned that the amount of training involved in a service dog pairing and training is lengthy and as a result, expensive. The initial cost for a VI K9 service dog reaches $40,000, with $7,000 required as a down payment. After training-related travel, food and accommodation, it’s more like $60,000, she says.
“I did a bunch of fundraising and started that process right away and then looked into Jordan’s Principle,” Voyageur explains.
Jordan’s Principle is a child-first principle that works to ensure First Nations children get the services they need. It’s named in memory of Jordan River Anderson, a child from Norway House Cree Nation in Manitoba who was born with complex medical needs. Anderson spent more than two years in the hospital while the province of Manitoba and the federal government argued over who should pay for home care.
Jordan’s Principle paid for the bulk of the cost for Nova, except for the admin fee, which Voyageur’s family fundraised for.
To fundraise, Voyageur used the power of social media for raffles and auctions. Artists from all over B.C. donated paintings, carvings, and jewelry. Family and community stepped up and showed their support.
“It was really heartwarming to receive that support from so many people.”
Nova trained to do two key tasks: fetch a bucket for Mackenzie and call for help.
The initial training took place through simulation, but the family refined her response during actual episodes, Voyageur explains.
“The first time Nova was just super concerned and she wanted to get the bucket. And then she was like, Oh no, she doesn’t need a bucket,” describes Voyageur. “You can just see her brain just going and her thoughts were going a mile a minute.”
Nova usually spends the early hours in the morning visiting and connecting with the other members of the family, while Mackenzie sleeps. If Mackenzie is having a near-episode, Nova stays in her room with her all day.
“Even before she wakes up, she already senses something,” Voyageur says.
Mackenzie takes on some of the training herself. When she starts to feel weak, she’ll have Nova hold her up a bit when she’s standing.
Nova wasn’t the first service dog the family grew to love and train for Mackenzie’s support. They spent a whole year with another dog, Jack. Unfortunately, Jack had motion sickness. The reality of driving Mackenzie to the hospital while juggling a dog that vomits was a “major deal-breaker,” Voyageur explains.
During this time with COVID, Voyageur says her family mostly hangs out at home, providing opportunities for Mackenzie and Nova to strengthen their bond.
Mackenzie loves having Nova as company, especially during the night, she says. Their favourite activities are snuggling and running around together, earning the pair the nickname “zoomies.”
“Hopefully she can get a new lease on life,” Voyageur says. “That’s really what I hoped and dreamed for, that she could grow to be her own person. I think there’ll be a new sense of independence, come the spring. I feel like her and Nova will be an unstoppable force that will let loose on the world.”