The clock has been reset on a sombre countdown, which could signal the end of a terminally ill Langford girl香蕉视频直播檚 access to life-sustaining treatment. 

Provincial funding for nine-year-old Charleigh Pollock香蕉视频直播檚 bi-weekly treatment for the rare genetic disorder Batten disease will now continue until the end of June, while the Ministry of Health continues its review of her case.

News of the funding extension came two days before Pollock香蕉视频直播檚 next round of treatment on March 27, which mom Jori Fales had feared would be her daughter香蕉视频直播檚 last.

香蕉视频直播淚t feels like temporary relief,香蕉视频直播� said Fales, speaking to Goldstream Gazette. 香蕉视频直播淚'm extremely grateful that her last infusion is not a day and a half from now, but knowing that we still don't know what the final outcome is weighs very heavy on our hearts.香蕉视频直播�

The nine-year-old香蕉视频直播檚 family was first told in early February that provincial funding for the drug Bineura was being pulled, with Feb. 27 set to be the final date for treatment. 

Following public backlash about the decision, an urgent review of Pollock香蕉视频直播檚 case was announced by the Ministry of Health, which extended funding until the end of March.

Tuesday香蕉视频直播檚 (March 25) news that her daughter will continue to receive treatment until the end of June is the first time the ministry has communicated with her since February, says Fales.

香蕉视频直播淲e have had zero updates since we started this,香蕉视频直播� she said. 香蕉视频直播淎s of just yesterday (March 24), I was crying my eyes out, thinking that the next infusion was the last. 

香蕉视频直播淚t has felt like 香蕉视频直播� it feels like a very horrific countdown every day, that has been on our minds before we go to sleep.香蕉视频直播�

While waiting in limbo for news has been 香蕉视频直播渁gony,香蕉视频直播� Fales says she and her family are grateful for the funding extension and will try to maintain a positive attitude in the coming weeks and months.

香蕉视频直播淎t the end of the day, we just want the right outcome to happen 香蕉视频直播� waiting longer, it香蕉视频直播檚 mixed emotions for sure,香蕉视频直播� she said. 香蕉视频直播淏ut if that's what it takes to end up with the right answer, what else can we do?

香蕉视频直播淚 am just very relieved that Charleigh will not suffer the consequences while they [Ministry of Health] are still continuing their discussions.香蕉视频直播�

The decision by the province to pull funding for the drug Bineura was a confusing one for Fales and her daughter香蕉视频直播檚 medical team, who believed the treatment had 香蕉视频直播渄ramatically slowed down香蕉视频直播� the progression of the genetic disorder Batten disease.

In February, Health Minister Josie Osborne explained 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 Canada香蕉视频直播檚 Drug Agency.

According to Fales, the clinical criteria used for the approval of Brineura is outdated and "needs to be updated immediately.香蕉视频直播� Something that she hopes will be considered as part of the review.

But while her daughter香蕉视频直播檚 medical team has 香蕉视频直播渄one everything they can to fight Charleigh香蕉视频直播檚 right to keep her medication,香蕉视频直播� Fales says she is 香蕉视频直播渧ery much in the dark香蕉视频直播� about what the ministry review is considering.

香蕉视频直播淗onestly, we don't know anything,香蕉视频直播� she says. 香蕉视频直播淲hich is alarming because I香蕉视频直播檓 unsure what decisions are being made and on what grounds. This is Charleigh香蕉视频直播檚 life in the balance right now.香蕉视频直播�

Osborne says the review will consider all the facts of Pollock香蕉视频直播檚 case and will determine whether 香蕉视频直播渃ontinuing treatment may still have quality-of-life benefits香蕉视频直播� for her.

香蕉视频直播淲e cannot presume the outcome of that review; however, to ensure coverage remains in place while we consult with the Canada Drug Agency and take into account the latest international evidence, the Ministry of Health has extended Brineura coverage for Charleigh until the end of June,香蕉视频直播� she said.

As Fales resets the clock on the countdown to a June decision by the ministry, she says life continues as normal for her daughter.

香蕉视频直播淪he just has her happy days 香蕉视频直播� as much as she probably picks up on our stress, we try not to do that in front of her, so she's great.

香蕉视频直播淪he's in a spring break camp this week, enjoying herself.香蕉视频直播�