Like many of those afflicted with Angelman syndrome, four-year-old Faith Gould has an unusually sunny disposition.
“She’s always happy,” said her mother Stacey Gould. “Always smiling.”
But she does face challenges.
Angelman syndrome is a genetic disorder that can cause neurological problems. Faith experiences seizures and suffers from developmental disabilities.
Lucky for her, the community has her back.
On May 6, over 100 residents participated in Elkford’s first ever Walk for Angels and raised more than $4,000 for the Canadian Angelman Syndrome Society.
For the first time, the Walk for Angels went national this year and other walks were also held in Winnipeg and Edmonton.
Stacey organized the event after meeting Kara Hanchar, the mother of another child with Angelman syndrome who organized Canada’s first ever Walk for Angels in Edmonton in 2015.
Inspired by Hanchar’s vision of having a Walk for Angels in every province, Stacey has turned her tiny mountain town into the third community to host a walk in Canada.
“It’s absolutely amazing. I feel like I’ve fulfilled that vision of spreading awareness in Elkford,” said Stacey. “It’s totally exceeded my expectations and I’m so thankful for everyone who has come. I was holding back tears like crazy. It’s super overwhelming to take it all in.”
In January, Stacey began the process of organizing the walk, going door-to-door looking for sponsorships but few had heard of the disorder that was afflicting her daughter.
But after a bit of explaining, Stacey found compassionate people. She said that almost every business in the valley contributed to the event in one way or another.
Overwaitea Foods donated food for 100 people, Mor Jerky donated burger patties and a host of other businesses donated gifts for the participants.
Trevor Janzen, president of the Canadian Angelman Society, came down from Calgary to participate in the Elkford walk along with his 15-year-old son Benjamin.
Benjamin was diagnosed with Angelman syndrome as an infant. Doctors told Janzen that his son would never walk, but he does, which allowed him to participate in the event.
“Now he’s just a going concern,” quipped Janzen.
“People like Stacey holding fundraisers for us, it’s great,” he said.
“For a community this size, you’ve done incredibly well,” he added.
Angelman syndrome affects about one in every 15,000 to 25,000 births and often goes undiagnosed or misdiagnosed as cerebral palsy or autism.
Janzen said it’s difficult to pinpoint how many people have the syndrome because it is a rare condition and the genetic test used to identify it is not always administered.
“Family doctors haven’t heard of it,” he said. “They don’t necessarily know what to do with genetic testing, so it’s a bit of a battle early on.”
When Faith was going through the diagnosing process three years ago in a Vancouver hospital, the doctors gave her mother the worst-case scenario. They said her daughter might not be able to walk, speak or feed herself.
Today, Faith walks and runs, and though she has trouble verbally communicating, she “has no issue getting across her points in what she wants,” said Stacey.
Faith’s eight-year-old sister Felicity has a typical relationship with her sibling.
“She’s kind of annoying,” said Felicity. “She likes to pull my hair.”
Stacey hopes the Elkford Walk for Angels will become an annual event that continues to raise awareness and support for her daughter and others with Angelman syndrome.
“For Faith, we’ll just take it day by day and see where she goes,” said Stacey. “She’s improving so much and as along as she’s happy, I’m happy, and that’s all that matters.”