Community fundraises for terminal B.C. girl’s treatments after province cuts funding

As Charleigh Pollock’s family waits to hear whether the B.C. government will defund the child’s treatment, her community is stepping up.

As Charleigh Pollock’s family waits to hear whether the B.C. government might reverse the decision to defund the terminally ill child’s expensive infusion treatments, her community is stepping up.

New information was presented to Health Minister Josie Osborne during a meeting last Friday, in the hopes the 10-year-old girl can continue taking Brineura to treat her Batten disease, a rare and fatal neurodegenerative disorder.

Her mother Jori Fales said the Vancouver Island family has not received an update since, even as Batten disease experts have warned Charleigh could suffer irreversible brain damage without the medication.

“It’s extremely draining, and every day that goes by we’re just in so much fear,” said Fales. “I just can’t understand why we’re not getting an answer one way or the other.”

• Related: B.C. not funding costly treatments for girl with rare disease

In the meantime, there has been a groundswell of local support – the Westshore business community has been fundraising as a stop-gap measure for Charleigh while the family waits on the province’s decision.

“We’ve raised just under $70,000,” said Ben Gulbrandsen, director of the Westshore Economic Development Committee.

That’s enough money to potentially fund two treatments for Charleigh. Gulbrandsen said those treatments would buy the young girl time while B.C. makes its decision – although there is a catch.

“What we’re facing is, who do we pay?” said Gulbrandsen. “We have the money and she needs the treatment.”

Fales said even if they can purchase Brineura privately, they’re unsure of the logistics involved in getting the infusions – or if they will even be allowed to bring it into the hospital.

She said Charleigh’s medical team is ready, just in case.

“They are on stand-by,” she said. “They are very much hoping to see our faces walk through that door again and to do the routine that we’ve been doing for the last six years.”