A Langford mom says she feels B次元官网网址渂lindsidedB次元官网网址� by the provinceB次元官网网址檚 decision to end funding for her terminally ill daughterB次元官网网址檚 life-sustaining treatment.

For over five years, nine-year-old Charleigh B次元官网网址� who lives with the rare genetic disorder Batten disease B次元官网网址� has been receiving bi-weekly enzyme replacement treatment, funded by the province.

Her mom Jori Fales says the treatment has B次元官网网址渄ramatically slowed downB次元官网网址� the progression of the disease.

Each year, funding of the treatment is reviewed by the province. Fales says she and CharleighB次元官网网址檚 father Trevor Pollock, expected the funding to continue as their daughterB次元官网网址檚 condition has B次元官网网址渘ot declined in years.B次元官网网址�

B次元官网网址淪he's thriving on this medication,B次元官网网址� she said.

But in early February, the family was told the provinceB次元官网网址檚 funding was to be discontinued, as Charleigh no longer meets the criteria for the drug Brineura.

B次元官网网址淭hey're deciding whether our child lives or dies,B次元官网网址� said Fales. B次元官网网址淲e don't have that decision B次元官网网址� the disease decides that first, but they [the province] are quickening that decision.B次元官网网址�

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.

B次元官网网址淐harleigh is stabilized, sheB次元官网网址檚 not going to improve, thatB次元官网网址檚 not how a degenerative disorder works,B次元官网网址� said Fales. B次元官网网址淪he's been stable for years, which is all we can hope for and be happy with, because it is a terminal illness. 

B次元官网网址淪he has a great quality of life and she is thriving, that's more than any Batten parent can ask for."

CharleighB次元官网网址檚 last infusion treatment will be on Feb. 27, and without it, Fales says her daughterB次元官网网址檚 quality of life will be B次元官网网址渟everely impacted.B次元官网网址�

B次元官网网址淎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,B次元官网网址� she said. B次元官网网址淪o our life will drastically change, and unfortunately, it'll change the most for Charleigh and she will endure suffering.B次元官网网址�

After sharing the news on social media, Fales was met with a wave of support and outrage about the provinceB次元官网网址檚 decision.

B次元官网网址淢y phone has not stopped blowing up with people asking how to help the situation,B次元官网网址� said Fales.

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

B次元官网网址淭o be honest, just the emotional support from the public means a lot,B次元官网网址� she said.

Less than 20 families in Canada are affected by Batten disease, says Fales, who feels concerned the provinceB次元官网网址檚 decision could have a knock-on effect.

B次元官网网址淚'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,B次元官网网址� she said.

Health Minister Josie Osborne said in an emailed statement she has 'deep empathy' for Charleigh's family.
 
B次元官网网址淗aving a child with a rare disease is an unimaginable journey, filled with uncertainty, fear and endless advocacy," she said.

B次元官网网址淐overage decisions under the Expensive Drugs for Rare Diseases program are made by medical experts based on clinical evidence and recommendations from CanadaB次元官网网址檚 Drug Agency,B次元官网网址� continued Osborne. B次元官网网址淭he clinical criteria for when to use Brineura, including when therapy no longer has benefits and should be discontinued, have not changed.B次元官网网址�

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 ministryB次元官网网址檚 Expensive Drugs for Rare Diseases review committee.

For now, all the family and CharleighB次元官网网址檚 medical team can do is appeal the decision, which they have 60 days to do.

B次元官网网址淚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,B次元官网网址� said Fales. "This shouldn't be decided by someone that is not in Charleigh's life."