White Rock gathering honours Miller, raises $5,500 for Mito Canada

Published 6:00 pm Monday, September 28, 2026

A South Surrey family’s effort to honour their son and raise awareness of mitochondrial disease brought the community together on Sept. 20, raising more than $5,500 for Mito Canada.

The “Light Up For Miller” gathering was held in White Rock in memory of Miller Collins, who died in 2025 at just five months old after being diagnosed with mitochondrial disease.

With the help of Mito Canada, Taylor and Chris Collins organized the Sunday event to share their son’s story, educate others about the rare group of diseases and raise funds toward research.

“It was incredible,” Taylor told Peace Arch News following the event. “Bigger and better than we even imagined.”

Taylor said the turnout gave the family an opportunity to speak with people who had never heard of mitochondrial disease.

“We had people approach us to see what it was all about,” she said. “It was so cool to get to talk to so many people about Miller and mito(chondrial disease).”

The event featured information booths, ice cream, mitochondria, green light bulb and fox-themed cookies, awareness bracelets, Light it Up for Miller T-shirts and sweatshirts and a prize draw.

The event raised a total of $5,500 for Mito Canada.

Prior to the event, the couple sat down with Peace Arch News and shared Miller’s story and their journey through learning about mitochondrial disease.

Miller was born May 16, 2025, following what Taylor described as a healthy pregnancy with no concerns.

“He was born very healthy and we had no concerns at all until around three months,” said Taylor. “That’s when we first noticed something atypical about him.”

Taylor and Chris said they noticed Miller was struggling to hold his head up. His neck and muscle strength did not seem to be developing at the same pace as other babies his age.

Taylor said they took him to a doctor, who told them it was still within the range of normal development. A pediatrician referral was made and Miller began physiotherapy.

The exercises appeared to help, said Taylor, noting that he was becoming a little stronger and seemed to be catching up.

However, around four months old, Taylor and Chris said they noticed something else.

Miller’s breathing had become irregular at times, sounding as though he was working hard to breathe even while resting.

Taylor explained that, because the breathing issue was not constant and they already had a pediatrician appointment scheduled, they planned to bring it up there.

“[The pediatrician] told us that at his age this can still be considered regular breathing,” Taylor said.

That very next day, however, Miller was taken to hospital.

Taylor shared things took a rapid and devastating turn when they arrived at the hospital and their son was found with an enlarged heart and dropping oxygen levels. Doctors intubated Miller and rushed him to the intensive care unit.

“He went from what we thought was fairly normal to being on life support,” said Chris.

“It was such a shocking experience, especially because the first four months of his life were totally smooth sailing,” Taylor said. “To have him crash so drastically was quite a shock.”

Miller was eventually diagnosed with mitochondrial disease, a broad group of rare genetic disorders that affect the mitochondria – structures in cells responsible for producing energy the body needs to function.

Taylor explained the disease can affect people in many different ways, including through muscle weakness, heart problems, circulation issues, digestive problems, neurological symptoms, vision and hearing issues, diabetes and many others.

“I think that one of the reasons it makes diagnosis and finding and treating it so difficult is that it’s so unpredictable in how it is going to show up in each person,” she said.

Taylor also shared she learned after Miller’s diagnosis that she carries a genetic trait associated with mitochondrial disease, despite being asymptomatic.

Miller died in October 2025, which was less than a year before the Light Up For Miller gathering at White Rock’s Memorial Park.

For Taylor and Chris, this experience highlighted how little many people – including themselves – knew about mitochondrial disease.

Chris said everyone they have spoken to who was unfamiliar with Miller’s story had also never heard of the disease.

Taylor and Chris both explained that there isn’t currently a cure for mitochondrial disease, and treatment generally focuses on managing symptoms.

Taylor said she hopes greater awareness can lead to more research, funding and earlier consideration of mitochondrial disease when people experience unexplained symptoms.

“I think if there was more awareness, a lot of people who have unexplainable symptoms or unexplainable child loss, doctors might be able to come up with that idea faster and maybe do some tests for this,” she said. “This is an intense disease that really affects people’s length of life and their quality of life.”

The Collins family has also found support from the community as they continue to grieve Miller’s death.

Taylor explained that talking about Miller and continuing to share his story has helped keep his memory alive.

“I want people to understand our story and learn about who he was as a person, because he was just the sweetest baby,” she said. “He was just getting into discovering the world.”

Chris notes that their family cannot change what happened to Miller, but they hope that sharing his story can help other struggling families.

“This is why it was so important for us to keep his name, his story and his legacy alive because we can’t change his story, but maybe we can help change somebody else’s story in the future,” Chris said.

For Taylor, that possibility is part of what she says keeps her moving forward.

“If somebody in Miller’s situation could survive something like that one day, that would be life-changing for the baby and for that family,” she said.

The Collins family hopes the Light Up For Miller gathering is just the beginning of continued conversation about mitochondrial disease and Miller’s legacy.

“This whole experience has been traumatic but at the same time has made us grateful for a lot and has shifted our perspective on life, and we just notice the small, beautiful things and little joys in life,” shared Taylor.

Learn more about mitochondrial disease at mitocanada.org.