The family of a terminally-ill nine-year-old girl has learned that the BC NDP will not be reinstating funding for her life-changing medication.Charleigh Pollock suffers from Batten disease, which causes recurring severe seizures and mobility loss.."We received final confirmation that Charleigh will not be receiving funding for her Brineura infusions," her mother, Jori Fales, said in a post on Instagram. "Our family is heartbroken and disgusted at the complete disregard of our daughter's life."Fales sent a strong message to the government, calling the decision "beyond evil and cruel.""We will never forget or heal from this traumatic situation," she added. "How dare anyone choose our daughter's life story ... Charleigh we are so sorry, you deserve so much better.".BC Conservatives call on health minister to continue funding nine-year-old girl's life-changing medication.In June, Charleigh and her family were given just one day's notice that the funding would be cut off after experts concluded that while Brineura is effective at slowing symptoms in patients until they reach a motor-language score of three or more, any lower, and it the drug loses its ability to work properly.The medication, which must be taken bi-weekly, costs around $800,000 per year..Since then, there has been widespread support for reinstatement of government assistance. Fales and three Batten disease experts met with Health Minister Josie Osborne to provide information they argued the Expensive Drugs for Rare Diseases committee had failed to take into account before making their decision.Despite their efforts, Osborne revealed Friday that the province would not be changing its mind."The Ministry can confirm now that all the relevant evidence provided by the patient advocates was already considered by the EDRD expert committees in February 2025 when Charleigh's physician appealed the decision to discontinue treatment and had the opportunity to provide additional information and meet with them to discuss the case," Osborne wrote in a statement, calling Charleigh's case "one of the most challenging issues I have worked on since becoming Health Minister."
