a day ago
Family of Charleigh Pollock told decision coming soon on funding for her rare disease
Charleigh Pollock poses on a field trip with her classmates on June 13, 2025.
Charleigh Pollock is a nine-year-old girl who suffers from Batten disease, a rare neurodegenerative disorder that leads to the progressive loss of brain function.
Charliegh was diagnosed at the tender age of three after she began suffering from relentless seizures. She was put on a drug call Brineura, which slowed the progression of the disease and stopped the seizures – until the B.C. government informed her medical team in February that she would no longer be covered.
'The last five months have been agonizing,' said Jori Fales, Charleigh's mother. 'It's on our minds every night and every morning, all day long.'
The drugs is expensive, Fales said, costing $844,000 per year.
Charleigh's team appealed the province's decision and the health minister stepped in, extending the treatments while the appeal process was ongoing.
Fales said she's recently been told a decision is coming soon.
'We will hear the final decision before the 19th of June,' she said.
Charleigh's mother fears the worst if the appeal doesn't go in her daughter's favour.
'Brineura is the only defence against this horrible disease, so if you take it away she will decline, lose more skills and will leave us,' she said.
The province's Expensive Drug For Rare Disease Committee has been tasked with making the decision if Charleigh's treatment will be funded going forward.
During that appeal process the committee asked the Canada Drug Agency to do an evidence review for Brineura. The findings of that report is giving Charleigh's mother hope.
'It says, 'insufficient data to establish discontinued criteria,'' said Fales. 'Without the appropriate data to help inform stopping the drug, the discontinuation should truly be a clinical decision made with the health-care team and the families impacted with this disease.'
Charleigh's medical team is in full support of the nine-year-old's continued Brineura treatment.
June 19 – the same day the family has been told they will receive the province's decision – is also the next scheduled infusion treatment.
If the decision doesn't go in Charleigh's favour, that will be her last treatment with the drug that her mother says is keeping her alive.
'Then we start preparing ourselves for the days ahead,' said Fales.
