Batten Disease
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Charleigh’s story: Mom says reinstating drug funding allows daughter to have dignityAfter weeks of fighting for the B.C. government to reinstate drug funding for Charleigh Pollock, Health Minister Josie Osborne announced Thursday that funding would be reinstated.HealthJul 18, 2025
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B.C. restores rare drug funding for 10-year-old girl with Batten diseaseCharleigh 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.PoliticsJul 17, 2025
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Drug-funding decision for B.C. girl with rare disease will not be reversedCharleigh 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.HealthJul 11, 2025
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B.C. mom says her daughter’s right to live taken after province stops funding drugCharleigh 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.HealthJun 19, 2025
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Terminally-ill B.C. girl with extremely rare disease will no longer have drug fundedThe 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.PoliticsJun 18, 2025
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‘This is our child’s life’: B.C. family gets small extension for crucial drug fundingA temporary reprieve for a Vancouver Island family after their terminally-ill daughter will continue to have access to life-changing medication for two more months.HealthMar 26, 2025
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B.C. ending rare drug coverage means girl will ‘suffer horrifically,’ family saysCharleigh Pollock, 9, is being treated for a terminal neurological disorder known as Batten disease with twice-monthly infusions of a drug that costs about $1 million per year.HealthFeb 11, 2025
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3 Alberta siblings with rare, terminal disorder finally have hope for a treatmentA family from Alberta with three children who have been diagnosed with the rare and fatal Batten disease has been given a new kind of hope due to an older medication.HealthAug 10, 2023
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‘1 in 8 billion’: How a devastating genetic anomaly hit 3 Alberta siblingsThree Alberta siblings have the same extremely rare genetic ailment called Batten Disease. It's a situation experts say is nearly impossible because the kids have different moms.HealthJun 23, 2021
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Coronavirus: Young Canadians with rare diseases feeling impact of pandemic"Why can't we take the same kind of initiative that we've had to COVID to helping our children with rare diseases?" asked CORD CEO Durhane Wong-Rieger.HealthMar 16, 2021
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