The province's decision to withdraw funding for a terminally ill Langford girlB次元官网网址檚 life-sustaining treatment is under 'urgent review'.

Nine-year-old Charleigh, who is the only child in B.C. living with the rare genetic disorder Batten disease, has been receiving bi-weekly enzyme replacement treatment, funded by the province for over five years.

Her family was recently told the province would be pulling its funding, as Charleigh no longer meets the criteria for the drug Brineura.

CharleighB次元官网网址檚 mom Jori Fales said she felt blindsided by the decision, especially as 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.

B次元官网网址淭hey're deciding whether our child lives or dies,B次元官网网址� Fales told Goldstream Gazette. 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�

CharleighB次元官网网址檚 last scheduled infusion treatment will be on Feb. 27, and without it, Fales has warned her daughterB次元官网网址檚 quality of life will deteriorate, with daily seizures one of many consequences. 

The decision to withdraw funding under the Expensive Drugs for Rare Diseases program was made by medical experts based on clinical evidence and recommendations from CanadaB次元官网网址檚 Drug Agency, explained Health Minister Josie Osborne in a Feb. 10 emailed statement, apparently standing by the resolution.

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� she said.

But less than 24 hours later, Osborne made an about-face.

B次元官网网址淚 have directed the Ministry of Health to urgently review all of the facts of this case and determine whether continuing treatment may have quality-of-life benefits for Charleigh,B次元官网网址� said the health minister.

The news has been cautiously welcomed by CharleighB次元官网网址檚 mom, who first heard of the review when she was told by Goldstream Gazette.

B次元官网网址淚'm feeling a lot of relief at the moment,B次元官网网址� said Fales. B次元官网网址淚B次元官网网址檓 hoping that it goes positively for Charleigh. But I'm still feeling scared. Without treatment, Charleigh will not have a good quality of life.B次元官网网址�

When Fales shared the news of CharleighB次元官网网址檚 plight on social media, thousands responded with messages of support. Many said they had contacted their MLA, calling for a reversal in the decision; support gratefully received by Fales and CharleighB次元官网网址檚 father Trevor Pollock.

But the Langford mom is not just concerned for her own daughter, she is worried the decision will impact the other families in Canada with children living with Batten disease, of which there are less than 20.

B次元官网网址淚 don't want this happening in other provinces and territories in Canada.B次元官网网址�

Before the minister's call for an 'urgent review', Charleigh's family and medical team B次元官网网址� who support the treatment continuing B次元官网网址� were readying themselves for an appeal.

But now Fales is hopeful the ministry will move fast with its urgent review of CharleighB次元官网网址檚 case, as with only two treatment infusions left before the end of February, time is running out for the nine-year-old.