It was never a big deal—it was simply our normal.
In Chilliwack, a sister's love has become a community's cause. On June 5, Amy Vander Wyk will host Light the Night — a dance fundraiser for Cure SMA Canada — born from a lifetime of watching her sister Holli live with spinal muscular atrophy, a rare genetic disease that quietly dismantles the body while leaving the mind untouched. Between 700 and 2,000 Canadians carry this condition, and for most of them, no cure exists. What begins as one family's private devotion is becoming an invitation for a wider circle to carry the weight together.
- Spinal muscular atrophy steals breathing, movement, and swallowing from thousands of Canadians — and for adults like 29-year-old Holli Vander Wyk, no cure is on the horizon.
- Amy Vander Wyk grew up treating her sister's wheelchair and the world's barriers as simply part of life — but the disease's relentless progression has made standing still feel impossible.
- On June 5, Amy is channeling decades of family advocacy into Light the Night, an inaugural dance event at Chilliwack Heritage Park featuring dinner, a silent auction, and community celebration.
- Every dollar raised flows to Cure SMA Canada — funding family support, a kids camp for children living with SMA, and research into treatments that do not yet exist.
- What started as one family carrying a wheelchair up a staircase, year after year, is now a public call for a community to help carry something larger.
Amy Vander Wyk has spent her life beside her older sister Holli, who was born with spinal muscular atrophy — a rare genetic disease affecting an estimated 700 to 2,000 Canadians that progressively weakens the muscles governing breathing, eating, and movement, while leaving cognition fully intact. Growing up in Chilliwack, Amy knew no other normal. Accessibility planning, wheelchair logistics, her father and brother hoisting Holli's chair up a Gulf Islands staircase on family camping trips — these were simply the rhythms of their household. "To my family, it was never a big deal," Amy recalled. "It was simply our normal."
Now 29, Holli lives with the knowledge that while treatments have improved, no cure exists for adults with SMA. The disease continues to take. And Amy, unwilling to only watch, has organized Light the Night — an inaugural fundraiser at Chilliwack Heritage Park on June 5. The evening will bring together dancing, dinner, a silent auction, games, and prizes, with all proceeds directed to Cure SMA Canada to support affected families, fund a kids camp for children living with SMA, and advance research into treatments still out of reach.
The Vander Wyk family's commitment to this cause spans decades, but Amy's decision to organize publicly marks a shift — from private devotion to community conversation. Holli, for her part, calls her sister one of her greatest supporters, someone who has stood beside her with "unwavering love, encouragement, and strength." She expressed deep pride in what Amy has built: not just a fundraiser, but a reflection of a person who refuses to let the disease define their family's story.
Light the Night begins at 7 p.m. on June 5 at Chilliwack Heritage Park. It is, on its surface, a dance and a meal. But it carries the accumulated weight of a family's years of advocacy, and the quiet, persistent hope of everyone living with a disease that medicine has not yet fully answered.
Amy Vander Wyk has spent her life watching her older sister navigate a world that wasn't built for her. Holli was born with spinal muscular atrophy, a rare genetic disease that progressively weakens the muscles controlling breathing, eating, walking, and the other small mechanics of staying alive. The condition affects somewhere between 700 and 2,000 Canadians. It does not touch the mind—people with SMA think and learn normally—but it steals function from the body, one system at a time.
For Amy, this was simply childhood. She grew up in Chilliwack with a sister in a wheelchair, and it was normal. It wasn't until later that she understood most families didn't have to plan around accessibility, didn't have to figure out how to get a wheelchair up a long staircase to a viewpoint on a Gulf Islands trail. But her father and brother did figure it out. They grabbed the corners of Holli's chair and carried both her and the wheelchair up the stairs, year after year, on their annual camping trips. "To my family, it was never a big deal," Amy said later. "It was simply our normal."
Now, at 29, Holli lives with the knowledge that while treatments have improved, there is still no cure—especially not for adults. The disease is progressive. It takes more each year. And Amy, now an adult herself, has decided to do something about it. On June 5, she is launching Light the Night, an inaugural fundraiser at Chilliwack Heritage Park. It will be a dance event, with dinner, a silent auction, games, and prizes. All proceeds go to Cure SMA Canada, supporting families affected by the disease, funding a kids camp for children living with SMA, and advancing research toward treatments that don't yet exist.
The Vander Wyk family has been fundraising for decades. This is not a new commitment. But Amy's decision to organize this event now, to put her name and energy behind it publicly, feels like a turning point—a moment when the private work of supporting a sibling becomes a community conversation. "SMA has always been a huge part of my life," she explained. "Watching someone you love live with a progressive disease is heartbreaking, especially when all you can do is stand by and support them."
Holli knows what her sister is doing. She calls Amy one of her biggest supporters, someone who has stood beside her with "unwavering love, encouragement, and strength." In a statement about the fundraiser, Holli reflected on what it means to have a sibling who refuses to let the disease define the family's story. "Not only is she helping raise awareness and support for a cause that is deeply personal to our family, but she is also showing the incredible compassion and dedication that she brings to everything she does," Holli said. "This fundraiser is a reflection of the kind, selfless person she is, and I couldn't be more proud to call her my sister."
Light the Night begins at 7 p.m. on Friday, June 5, at Chilliwack Heritage Park. It is, in some ways, a simple event—a dance, a meal, an auction. But it carries the weight of a family's decades of advocacy, and the hope of everyone living with a disease for which a cure does not yet exist. The money raised will go toward immediate support for families navigating life with SMA, toward giving children a space to be together, and toward the research that might one day change everything.
Notable Quotes
Watching someone you love live with a progressive disease is heartbreaking, especially when all you can do is stand by and support them.— Amy Vander Wyk, event organizer
This fundraiser is a reflection of the kind, selfless person she is, and I couldn't be more proud to call her my sister.— Holli Vander Wyk, on her sister Amy
The Hearth Conversation Another angle on the story
What made Amy decide to organize this fundraiser now, at this particular moment?
She's been supporting her sister her whole life, but I think there's a shift when you move into adulthood and realize you have the power to do something bigger. The family had been fundraising for decades in quieter ways. This feels like Amy saying: I'm going to make this visible, I'm going to ask the community to show up.
Does Holli feel like the disease defines her, or has the family managed to keep it from becoming the whole story?
The family's approach seems to be that SMA is part of the story, but not the only story. They went on camping trips. They carried a wheelchair up stairs so Holli could see a view. Those moments—the effort, the normalcy of the effort—that's what Amy holds onto. But Holli also lives with the reality that there's no cure yet, especially for adults. So it's both: acceptance of what is, and refusal to accept that it has to stay this way.
Why does it matter that SMA doesn't affect cognition?
Because it means Holli experiences her own limitations with full awareness. She understands what she can't do, what's being taken from her. But it also means she can advocate for herself, can think about her own future, can feel the weight of living in a body that's progressively failing while her mind stays sharp. That's a particular kind of cruelty.
What does the fundraiser actually fund?
Three things: immediate family support—help for people navigating life with SMA right now; a kids camp, so children with the disease have community; and research. The research piece is the long game. There's no cure yet, but the money goes toward finding one.
How rare is this disease, really?
Seven hundred to two thousand Canadians. That's rare enough that most people have never heard of it, rare enough that it doesn't get the research funding of more common diseases. But it's also not so rare that the people living with it are alone. There's a community. Amy's fundraiser is a way of saying: this community exists, and it matters.