Ten-year-old Langford, B.C., girl Charleigh Pollock will receive another round of medication for her rare disease after the province cut off funding for her treatments last month.
Charleigh has Batten Disease, a terminal neurological disorder, and had been receiving a drug called Brineura, which stabilizes her condition, for roughly the past six years, according to family members.
The province ended funding for those treatments on June 18, saying that Charleigh had progressed past the point where the medication was effective, and a final review and discussion between family members and the Ministry of Health on July 11 confirmed that the funding would not be restarted.
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On Tuesday, however, Charleigh’s family announced that the girl’s first round of privately funded Brineura treatment was scheduled for July 17, after community members raised enough money for two more rounds of treatment.
Previously, the Ministry of Health said the family had been speaking with Island Health on how to accomodate the privately funded treatments.
Each year, the medication costs around $800,000, with Charleigh receiving infusions of Brienura once every two weeks.
“With your generosity and support, it has been made possible to purchase the 1st privately funded dose of Brineura,” wrote the family in a social media post Tuesday.
“We never thought we would ever be in a position to have to ask for help to keep our Charleigh alive, we are beyond grateful to all of you,” they said. “We know it’s one infusion at a time at this point and we are hopeful to give Charleigh as many as we can.”
Family members have set up a GoFundMe campaign to try to continue treatments for as long as possible.
Last week, a local pizza shop also set up a fundraiser, giving 50 per cent of its sales to the family for the medication.