\u201cLight Up For Miller\u201d gathering<\/a> 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. <\/p>\nWith the help of Mito Canada, Taylor and Chris Collins organized the Sunday event to share their son\u2019s story, educate others about the rare group of diseases and raise funds toward research. <\/p>\n
\u201cIt was incredible,\u201d Taylor told Peace Arch News following the event. \u201cBigger and better than we even imagined.\u201d <\/p>\n
Taylor said the turnout gave the family an opportunity to speak with people who had never heard of mitochondrial disease. <\/p>\n
\u201cWe had people approach us to see what it was all about,\u201d she said. \u201cIt was so cool to get to talk to so many people about Miller and mito(chondrial disease).\u201d <\/p>\n
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. <\/p>\n
The event raised a total of $5,500 for Mito Canada. <\/p>\n
Prior to the event, the couple sat down with Peace Arch News and shared Miller\u2019s story and their journey through learning about mitochondrial disease. <\/p>\n
Miller was born May 16, 2025, following what Taylor described as a healthy pregnancy with no concerns.<\/p>\n
\u201cHe was born very healthy and we had no concerns at all until around three months,\u201d said Taylor. \u201cThat\u2019s when we first noticed something atypical about him.\u201d <\/p>\n
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. <\/p>\n
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. <\/p>\n
The exercises appeared to help, said Taylor, noting that he was becoming a little stronger and seemed to be catching up. <\/p>\n
However, around four months old, Taylor and Chris said they noticed something else. <\/p>\n
Miller\u2019s breathing had become irregular at times, sounding as though he was working hard to breathe even while resting. <\/p>\n
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. <\/p>\n
\u201c[The pediatrician] told us that at his age this can still be considered regular breathing,\u201d Taylor said.<\/p>\n
That very next day, however, Miller was taken to hospital. <\/p>\n
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. <\/p>\n
\u201cHe went from what we thought was fairly normal to being on life support,\u201d said Chris. <\/p>\n
\u201cIt was such a shocking experience, especially because the first four months of his life were totally smooth sailing,\u201d Taylor said. \u201cTo have him crash so drastically was quite a shock.\u201d <\/p>\n
Miller was eventually diagnosed with mitochondrial disease, a broad group of rare genetic disorders that affect the mitochondria \u2013 structures in cells responsible for producing energy the body needs to function. <\/p>\n
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. <\/p>\n
\u201cI think that one of the reasons it makes diagnosis and finding and treating it so difficult is that it\u2019s so unpredictable in how it is going to show up in each person,\u201d she said. <\/p>\n
Taylor also shared she learned after Miller\u2019s diagnosis that she carries a genetic trait associated with mitochondrial disease, despite being asymptomatic. <\/p>\n
Miller died in October 2025, which was less than a year before the Light Up For Miller gathering at White Rock\u2019s Memorial Park. <\/p>\n
For Taylor and Chris, this experience highlighted how little many people \u2013 including themselves \u2013 knew about mitochondrial disease. <\/p>\n
Chris said everyone they have spoken to who was unfamiliar with Miller\u2019s story had also never heard of the disease. <\/p>\n
Taylor and Chris both explained that there isn\u2019t currently a cure for mitochondrial disease, and treatment generally focuses on managing symptoms. <\/p>\n
Taylor said she hopes greater awareness can lead to more research, funding and earlier consideration of mitochondrial disease when people experience unexplained symptoms. <\/p>\n
\u201cI 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,\u201d she said. \u201cThis is an intense disease that really affects people\u2019s length of life and their quality of life.\u201d<\/p>\n
The Collins family has also found support from the community as they continue to grieve Miller\u2019s death. <\/p>\n
Taylor explained that talking about Miller and continuing to share his story has helped keep his memory alive. <\/p>\n
\u201cI want people to understand our story and learn about who he was as a person, because he was just the sweetest baby,\u201d she said. \u201cHe was just getting into discovering the world.\u201d<\/p>\n
Chris notes that their family cannot change what happened to Miller, but they hope that sharing his story can help other struggling families. <\/p>\n
\u201cThis is why it was so important for us to keep his name, his story and his legacy alive because we can\u2019t change his story, but maybe we can help change somebody else\u2019s story in the future,\u201d Chris said.<\/p>\n
For Taylor, that possibility is part of what she says keeps her moving forward. <\/p>\n
\u201cIf somebody in Miller\u2019s situation could survive something like that one day, that would be life-changing for the baby and for that family,\u201d she said. <\/p>\n
The Collins family hopes the Light Up For Miller gathering is just the beginning of continued conversation about mitochondrial disease and Miller\u2019s legacy. <\/p>\n
\u201cThis 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,\u201d shared Taylor. <\/p>\n
Learn more about mitochondrial disease at mitocanada.org<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"A South Surrey family\u2019s effort to honour their son and raise awareness of mitochondrial disease brought the community…\n","protected":false},"author":2,"featured_media":913831,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[49,48,84],"class_list":["post-913830","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-ca","tag-canada","tag-health"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/913830","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=913830"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/913830\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/913831"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=913830"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=913830"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=913830"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}