directed staff to investigate the case of a terminally ill Langford child who is weeks from losing provincial funding for a drug that keeps her alive.

The family of nine-year-old Charleigh Pollock, who attends Happy Valley School, was told last week that funding will soon end for the enzyme-replacement infusions she receives bi-weekly for a rare, progressive and fatal neurodegenerative disorder known as Batten disease.

The annual cost to the province for the Brineura infusion for Charleigh — the only child in B.C. with the disease and one of fewer than 20 in Canada — is about $1 million.

A committee recommended this month ending the funding, with the final infusion on Feb. 27. Two weeks after that, Charleigh faces “rapid deterioration, irreversible loss of function and ultimately death,” mother Jori Fales said

“Ultimately, death,” mother Jori Fales stated. On Tuesday afternoon, Osborne stated in a statement that she had asked ministry staff to “urgently review all of the facts” to determine whether treatment will improve Charleigh’s quality of life.

Fales stated that Charleigh’s physician team has recommended that she continue to get Brineura infusions, the only medicine approved to treat ceroid lipofuscinosis type 2 (CLN2). Andrew Villani, executive director of communications for BioMarin Pharmaceutical Inc.,

which manufactures Brineura, said the firm was aware that the B.C. government system would no longer finance the “vital” treatment, but would to comment on whether the company would subsidize the drug’s cost. Charleigh was three years old when she started having inexplicable seizures and quickly lost her ability to walk

Charleigh was three years old when she started having inexplicable seizures and soon lost her abilities to walk and talk. After Charleigh was diagnosed, Fales and her father, Trevor Pollock, pushed for funding for Brineura, which she has been taking for the past five and a half years. Her parents felt Charleigh would be able to continue taking the prescription as long as she was benefiting from it, which she is — for example, she no longer experiences many seizures each day. However, the Canadian Drug Expert Committee, which decides on financing, “feels she’s not meeting the criteria anymore, which is simply false; she is thriving,” said Fales. The committee, which includes both drug experts and lay members, offers reimbursement recommendations to walk in this world and have quality of life.”

Fales. “She reaches for her parents.” She laughs. She giggles. She enjoys going swimming. She engages with all of her peers at school. Fales said it’s difficult enough to raise a chronically ill kid knowing she would die one day, “but the thought of losing her much sooner than needed is unfathomable.” “I’ve gone through shock to sadness to anger to immediately motivated to fight this.” Fales stated that approximately 400 children globally are on the medicine, and Charleigh is the first child to be denied financing. She stated that she understands that her daughter cannot remain on the medicine indefinitely, and that if she was bedridden and declining, “we obviously would make the choice to discontinue treatment.” “But it should be her decision.”

Fales stated that it is her parents’ decision to terminate treatment, not a committee aiming to save money. “That’s what’s happening.” In a letter to Osborne dated Tuesday, Courtenay-Comox Conservative MLA Brennan Day, a critic for rural health, urged the minister to change the funding decision to “prevent a tragic and entirely avoidable outcome.” In a phone interview, Day stated that as the father of a seven-year-old, he found his chat with the family very difficult. He wants the province to meet with Charleigh’s family and medical team so they may explain her case directly, especially given the lack of clarity around the committee’s decision and criteria.

Furthermore, Charleigh is now the first child in the world to have this treatment discontinued — an alarming distinction for British Columbia, and your ministry, to hold,” Day said in his letter, arguing that in a publicly funded health-care system, the $1-million annual cost should not be a deciding factor in “whether a child lives or dies.”

Fales said she wasn’t prepared to have to fight to keep her daughter on the drug, imagining the decision would come from Charleigh’s medical team.

“Also, I know my daughter better than anyone, and I know she’ll let me know when it’s time for her final rest,” said Fales. “And it is not even close.”