a day ago
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.
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'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.'
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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.'
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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.
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'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.'
