In 2025, Charleigh Pollock and her mom Jori Fales became household names – but not by choice.
Thrusting the pair into the spotlight was a fight with the B.C. government to keep the medication that was slowing the progression of the 10-year-old’s terminal illness.
The battle stretched on for nearly six months, with hopes continually raised and dashed while the province reviewed its decision, until eventually it was reversed.
For Fales, those months were defined by fear.
“It took a chunk of our lives that we’re never going to get back,” she said. “There’s still a lot of deep trauma from the pain that we were going to lose Charleigh prematurely due to the choice of individuals that did not have all the information, the evidence or the expertise.
“As her mother, that is something that’s really, really hard to heal from.”
Everything changed for the family in February, when the province announced it would no longer fund Pollock’s access to Brineura, a bi-weekly enzyme replacement therapy she had been receiving since the age of three.
The drug, which costs roughly $800,000 a year, slows the progression of Batten disease – a rare, degenerative neurological disorder.
For the family — residents fo the Victoria suburb of Langford — the decision was devastating.
Fales argued that her daughter was still benefiting from the infusions, which had given her a life free from daily seizures. The province disagreed, claiming Pollock’s motor and verbal skills had declined to a point that suggested she was no longer benefiting from the treatment.
Overnight, a private medical journey became a public debate. But, while the family was grappling with the darkest months of their lives, support swelled far beyond Langford.
After what was thought to be Pollock’s final provincially funded dose of Brineura in June, the community rallied. In a matter of days, over $70,000 was raised to help the family purchase the drug privately.
Pollock’s health team and Batten disease experts from across the world also spoke out against the decision.
Going the extra mile was Dr. Ineka Whiteman, head of research and medical affairs for the Batten Disease Support Research and Advocacy Foundation, who flew from New Zealand to meet with Health Minister Josie Osborne and plead the family’s case.
Awareness of Batten disease reached levels Fales had never imagined.
“It’s hard to even find words to understand the deep gratitude I have for all the people that supported Charleigh,” she says. “The fact that people flew across the world because they knew how wrong this decision was, it still blows my mind.
“And I love my Batten disease community – I think we are a group of extremely strong individuals.”
The tipping point for the province came in July when a letter from over a dozen U.S. Batten disease clinicians and researchers raised concerns about the “clinical and scientific justification” used by the province to discontinue funding.
It prompted an about-face by Osborne, who reinstated coverage “for as long as the treating physician and the family deem it appropriate.”
“As I’ve said from the very beginning, every Batten disease family knows when that decision needs to be made, and it most definitely was not Charleigh’s time this year,” said Fales.
Pollock returned to her regular routine, visiting hospital every two weeks for her infusions, her medical team “elated” she could continue treatment.
“Charleigh’s doing really, really well,” said Fales. “We have not seen any further decline with her disease. So we’re very, very fortunate that she still has her medication.”
Still, healing from the ordeal continues.
“There’s still so much gratitude, because I still have my daughter,” said Fales. “So we’re trying to stay positive, but it really put a extra sadness on our journey that was already profoundly sad due to her diagnosis.”
Alongside her decision to reinstate Pollock’s funding, Osborne also commissioned an independent assessment of Brineura to help guide both clinical practice and public policy.
Fales hopes the province follows through with the review as promised. Her hope, she says, is that no other Batten family ever faces the same experience.
“I’m very proud of my daughter,” she said. “This is now going to be her legacy – that she might help save someone else. Because I don’t feel this is going to happen in any other province since what happened to Charleigh.”
Since the summer, the family has focused on rebuilding a quieter life, capturing memories in photos and videos.
“This has really reminded our family that life is short and to spend as much time with Charleigh as possible,” said Fales.
Pollock’s school continues to be a huge support too, including her in performances and milestone moments.
“Just yesterday (Dec. 10), Charleigh did the announcement at her school Christmas concert in front of everybody,” said the proud mom. “I’m just always so grateful and happy of all the love that’s been shown to our family and most especially to Charleigh.”
In stark contrast to their turbulent start to the year, the family will round the year out quietly at home. “We’re just going to enjoy every minute,” said Fales. “When you have a terminally ill child, you don’t know how many more holidays you have.
“We’re just very, very grateful that Charleigh will wake up Christmas morning with us. If her medication had been taken away in February, there’s a good chance we wouldn’t be celebrating with her this year.”
Looking back on 2025, Fales says it changed her in ways she is still processing.
“I lost a part of myself this year,” she said. “But it also showed how resilient we can be, the strength of a mother and a child, and how you won’t let anyone hurt them or break your spirit.
“I’m always grateful that Charleigh’s here – but it was a very hard experience.”
Her hope for 2026 is simple: continued quality of life for her daughter, and a much quieter year.
And despite everything, she keeps returning to the same message, one she says Charleigh embodies every single day.
“I always want the message of love and gratitude to come through,” she said. “That’s something Charleigh shows every day.
“And I think if we can all be a little bit like Charleigh, we’re all going to be a better person.”