Jori Fales describes Thursday as a bit of a blur.
After fighting for weeks for the B.C. government to reinstate drug funding for her daughter, who has Batten disease, Health Minister Josie Osborne announced Thursday evening that funding would be reinstated.
“It’s been a big day,” Fales said.
“We had Charleigh’s first privately funded infusion. Everything went seamlessly and we are relieved that the medicine is now in her nervous system and then coming home this afternoon and getting the best news ever tonight personally from the minister has just given our family the biggest sense of relief.
“We’re very, very happy.”
Fales’ 10-year-old daughter, Charleigh Pollock, has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short.
On June 18, Charleigh’s family was informed that government funding of a drug called Brineura, which her family said has stabilized her condition and radically improved her quality of life since her 2019 diagnosis, would be cut off.
The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million.
Charleigh’s family appealed to the B.C. Ministry of Health to reverse the decision and consider more research and speak to more experts.
Then, a group of experts on Batten disease in the United States penned a letter to B.C.’s health minister and premier, strongly opposing the decision to withdraw funding for Charleigh.
“I spoke to Charleigh’s family earlier this evening. I confirmed to them that I have reinstated Charleigh’s Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate,” Osborne said in a statement on Thursday.
Fales said: “I just know that Charlie will have Brineura for as long as she needs it until the day comes that our medical team and our family decides that we no longer want to continue with them.
“This is what we’ve been hoping for from the very beginning, so this is incredible news.”
Fales said she has been so grateful for the outpouring of support and love from people and experts around the world.
“That has kept us going,” she said.
“There has been some dark days where we were thinking, ‘Can we keep doing this?’ But then we would look into Charleigh’s eyes and know that there’s no way we can stop fighting and having the backing of so much support of our community has raised us up and kept us and beyond grateful.
“Grateful forever.”
Batten Disease experts call on B.C. to reinstate Charleigh Pollock’s transfusion funding
Fales said she hopes her daughter’s case sets a precedent that when it comes to these decisions, families and medical care teams should be the ones making them.
“It’s already hard enough raising a child with a terminal illness, but then having someone else decide how their story goes has never sat right with us. And that was one of our driving forces to keep fighting for our girl and let her have her dignity. And let her tell her life story.”