A Langford mom says she feels 91裸聊视频渂lindsided91裸聊视频� by the province91裸聊视频檚 decision to end funding for her terminally ill daughter91裸聊视频檚 life-sustaining treatment.

For over five years, nine-year-old Charleigh 91裸聊视频� who lives with the rare genetic disorder Batten disease 91裸聊视频� has been receiving bi-weekly enzyme replacement treatment, funded by the province.

Her mom Jori Fales says the treatment has 91裸聊视频渄ramatically slowed down91裸聊视频� the progression of the disease.

Each year, funding of the treatment is reviewed by the province. Fales says she and Charleigh91裸聊视频檚 father Trevor Pollock, expected the funding to continue as their daughter91裸聊视频檚 condition has 91裸聊视频渘ot declined in years.91裸聊视频�

91裸聊视频淪he's thriving on this medication,91裸聊视频� she said.

But in early February, the family was told the province91裸聊视频檚 funding was to be discontinued, as Charleigh no longer meets the criteria for the drug Brineura.

91裸聊视频淭hey're deciding whether our child lives or dies,91裸聊视频� said Fales. 91裸聊视频淲e don't have that decision 91裸聊视频� the disease decides that first, but they [the province] are quickening that decision.91裸聊视频�

According to Fales, the decision has been made as Charleigh is showing no signs of improvement, but the Langford mom says that is an impossible ask of someone with a terminal illness.

91裸聊视频淐harleigh is stabilized, she91裸聊视频檚 not going to improve, that91裸聊视频檚 not how a degenerative disorder works,91裸聊视频� said Fales. 91裸聊视频淪he's been stable for years, which is all we can hope for and be happy with, because it is a terminal illness. 

91裸聊视频淪he has a great quality of life and she is thriving, that's more than any Batten parent can ask for."

Charleigh91裸聊视频檚 last infusion treatment will be on Feb. 27, and without it, Fales says her daughter91裸聊视频檚 quality of life will be 91裸聊视频渟everely impacted.91裸聊视频�

91裸聊视频淎t the moment, Charleigh is seizure free and her organs are not shutting down, or all the other nasty things that she will eventually succumb to,91裸聊视频� she said. 91裸聊视频淪o our life will drastically change, and unfortunately, it'll change the most for Charleigh and she will endure suffering.91裸聊视频�

After sharing the news on social media, Fales was met with a wave of support and outrage about the province91裸聊视频檚 decision.

91裸聊视频淢y phone has not stopped blowing up with people asking how to help the situation,91裸聊视频� said Fales.

To help, Fales says people should continue to share her social media posts and write to their MLA.

91裸聊视频淭o be honest, just the emotional support from the public means a lot,91裸聊视频� she said.

Less than 20 families in Canada are affected by Batten disease, says Fales, who feels concerned the province91裸聊视频檚 decision could have a knock-on effect.

91裸聊视频淚'm feeling the weight of the world right now for my daughter, but I'm also feeling it because I'm concerned that if British Columbia discontinues it, I don't want this happening in other provinces and territories in Canada to other children,91裸聊视频� she said.

Health Minister Josie Osborne said in an emailed statement she has 'deep empathy' for Charleigh's family.
 
91裸聊视频淗aving a child with a rare disease is an unimaginable journey, filled with uncertainty, fear and endless advocacy," she said.

91裸聊视频淐overage decisions under the Expensive Drugs for Rare Diseases program are made by medical experts based on clinical evidence and recommendations from Canada91裸聊视频檚 Drug Agency,91裸聊视频� continued Osborne. 91裸聊视频淭he clinical criteria for when to use Brineura, including when therapy no longer has benefits and should be discontinued, have not changed.91裸聊视频�

Unable to comment on the details of the case, Osborne said she hopes families "facing incredibly difficult situations" similar to Charleigh's, continue working with their care team to provide updates on their children's conditions to the ministry91裸聊视频檚 Expensive Drugs for Rare Diseases review committee.

For now, all the family and Charleigh91裸聊视频檚 medical team can do is appeal the decision, which they have 60 days to do.

91裸聊视频淚t's very time-sensitive because we don't want her to miss any doses, which she will if her appeal isn't heard quickly,91裸聊视频� said Fales. "This shouldn't be decided by someone that is not in Charleigh's life."