Mother of girl with rare disease says “nightmare is over” after B.C. restores funding

By Canadian Press on July 18, 2025.

VICTORIA — The mother of a 10-year-old Vancouver Island girl who has an extremely rare disease says the “nightmare is over” after the government restored funding for her daughter’s drug for as long as she needs it.

Charleigh Pollock is the only person in B.C. to have Batten disease, and her mother Jori Fales says in a social post that she is “beyond grateful” for “all the beautiful humans that have moved mountains” for her daughter.

Pollock says the “love, support, generosity, compassion, kindness and devotion” shown by supporters of her daughters are “unmatched.”

Health Minister Josie Osborne announced on Thursday that the government has restored funding for the drug Brineura, which costs about $1 million per year.

Government had cut off funding last month, citing an expert committee that said the drug was no longer helping to slow the progress of the girl’s disease.

Premier David Eby acknowledged on Thursday that a letter from a different group of experts in the United States had raised concern about the decision, and Osborne said the girl and her family should not suffer because of a “significant disagreement” among experts.

This report by The Canadian Press was first published July 18, 2025.

Wolfgang Depner, The Canadian Press