Latest news with #Fales
Global News
11 hours ago
- Health
- Global News
B.C. mom says her daughter's right to live taken after province stops funding drug
The mother of a terminally ill nine-year-old girl said she is still processing news she received from the B.C. government on Wednesday. 'I think we're still in shock,' Jori Fales said. Her daughter, Charleigh Pollock, has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short. The B.C. government had been funding a drug called Brineura, which the family said has stabilized Charleigh's condition and radically improved her quality of life since her 2019 diagnosis. On Wednesday, the government told Charleigh's family that 'Charleigh has met the discontinuation criteria' and her last government-funded dose would be given on Thursday. 'I wholeheartedly did not think that this was going to be the outcome after the last five months,' Fales said. Story continues below advertisement 'So we're still processing. Emotions have gone from sheer heartbreak to anger to sadness. It's just, we've been on a roller coaster the last 24 hours. Today is a really sad day, taking Charleigh to the hospital for her last infusion. 'It's been six years of doing this with my daughter. It's tough.' Get weekly health news Receive the latest medical news and health information delivered to you every Sunday. Sign up for weekly health newsletter Sign Up By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy Charleigh is one of fewer than 20 children in Canada with this rare condition. She is the only patient in B.C. and was diagnosed just a few weeks before her fourth birthday. 'There's a lot of tears this morning,' Fales said. 'But you know who's smiling? Charleigh. She's smiling.' She added she wished they had received more notice that the funding was ending, as they had no time to grieve. 'I think it's a little heartless. We could have used some time to process and prepare. I mean there's no way of really preparing to lose the medication that's keeping your daughter's quality of life going, but if we had had some time.' Fales expressed frustration because no one knows what it's like to live in their world. 'Within 14 days, the medication will have left her brain, her system,' she added. 'We are not really prepared for what's to come. As her parent, I will be reaching out to the Cannuck Place Hospice, I will asking questions, I feel there's things that we need to learn to be prepared for. Things that we were not ready for, that Charleigh's not ready for. But this is happening now. So we're being forced to move forward.' Story continues below advertisement 2:20 B.C. set to end child's crucial drug treatment funding Fales said her daughter's right to live has been taken from her. 'It should have always been the decision of her medical care team and her family and Charleigh. And none of that has happened here. And I'm very sorry to my daughter. She's being let down and we need to carry this now for the rest of our lives and it hurts a lot.' Fales said Charleigh did not deserve this disease or this outcome and all they can do is love her and make every day count. She said she will continue to share Charleigh's journey online. 'I'm not going to hide what's to come. I feel that it's important for advocacy and awareness of this disease that people see what it's all about. Story continues below advertisement 'There's always the hope for a cure one day. It obviously won't be in Charleigh's time, but we always, always remain hopeful that other families will not have to go through this.'
Global News
2 days ago
- Health
- Global News
Terminally-ill B.C. girl with extremely rare disease will no longer have drug funded
The B.C. Ministry of Health has determined that a terminally ill nine-year-old girl will no longer continue to get access to a life-changing drug. Charleigh Pollock has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short. Her mother, Jori Fales, was informed on Wednesday that her daughter's final government-funded treatment will be on Thursday. Fales says a drug called Brineura has stabilized Charleigh's condition and radically improved her quality of life since her 2019 diagnosis. The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million. Choking back tears, B.C. Health Minister Josie Osborne said at a press conference on Wednesday that 'Charleigh has met the discontinuation criteria.' She said there is no cure for Charleigh's condition and Brineura is not an anti-seizure medication. Story continues below advertisement She added that clinical evidence has shown that the drug is no longer benefiting Charleigh. Earlier this year, the province's Expensive Drug For Rare Disease Committee determined the drug was no longer meeting the criteria for funding in this case. Health Minister Josie Osborne stepped in and asked for an additional review, extending the drug coverage for an additional four months. 2:18 Fight for B.C. girl's life-changing medication The Canada Drug Agency has now done the review for Brineura and based on that review, the province determined the drug was no longer eligible for funding. Get weekly health news Receive the latest medical news and health information delivered to you every Sunday. Sign up for weekly health newsletter Sign Up By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy Charleigh is one of fewer than 20 children in Canada with this rare condition. She is the only patient in B.C. and was diagnosed just a few weeks before her fourth birthday. The B.C. government has never overruled the independent rare drug committee on a drug funding decision. Story continues below advertisement The United Kingdom recently decided to stop publicly funding the drug in all cases. In British Columbia, there is still funding available in certain circumstances and is reviewed on an individual basis. 2:20 B.C. set to end child's crucial drug treatment funding In a previous interview, Fales told Global News losing access to the drug would be 'catastrophic' for her daughter. 'She will have seizures again, her organs will start shutting down, she will require suction to breathe… it basically means she is going to suffer horrifically and be put to an earlier death,' she said. 'This life is painful enough, having to raise a terminally ill child, and now having to fight to keep her in this world — like, just let us have our life back and let us have our child for the time we have left and let her be pain-free.' Story continues below advertisement A GoFundMe remains active for anyone who wants to donate to the family.
