The community has stepped up to the plate to help buy Langford girl Charleigh Pollock more time with her family.
Ten-year-old Pollock will receive her first privately funded dose of the drug Brineura on Thursday, July 15.
"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," said mom Jori Fales, sharing the news on social media.
For six years, Pollock has been receiving bi-weekly infusions of the drug funded by the province, costing around $800,000 a year. The drug slows the progression of the rare neurological disorder Pollock lives with: Batten disease.
The terminal disease has a general life expectancy of around 10 to 12 years of age. But for Pollock 鈥� who has been treated since she was three 鈥� the future is unknown.
Health Minister Josie Osborne confirmed July 11, the ministry would be standing by a decision initially made in February this year, to end the 10-year-old's funding 鈥済iven that there is no clinical evidence it would provide further benefits.鈥�
The girl's family, medical team and Batten disease experts argue Brineura still has many benefits for Pollock, including a life free from daily seizures.
"It鈥檚 not a cure, but it is giving Charleigh more time, more stability, quality of life and more memories with the people who love her," said Fales.
Without therapeutic levels of the "life-sustaining" enzyme, it is expected the disease's symptoms will return and Pollock's condition will deteriorate as a result.
An online fundraiser with a target of $500,000 has been launched by the family to help pay for Brineura infusions and end-of-life care in the future 鈥� raising more than $25,000 in a matter of days. The new fundraiser replaces another GoFundMe page first opened over six years ago, which had raised over $256,000 since its launch.
According to Fales, each dose of Brineura costs $33,000, plus additional unknown costs. "I haven't seen the bill yet," she told Goldstream Gazette.
So far, they have enough to fund her July 15 infusion and another two weeks later.
Fales says she understands the fundraiser is not a long-term solution, but she hopes enough money can be raised to fund infusions for as long as possible.
"We're taking it one dose at a time," she said.
To donate to the 'I stand with Charleigh' fundraiser, visit: .