香蕉视频直播淭ime is neurons香蕉视频直播� for 10-year-old Langford girl Charleigh Pollock.
Living with the rare neurological disorder Batten disease, Pollock is waiting to see if the province will reverse a decision to end her funding for the drug Brineura.
Pollock香蕉视频直播檚 last infusion treatment was June 19, her next would have been July 3.
香蕉视频直播淐harleigh is now without therapeutic levels of this life-sustaining enzyme in her brain, and so every day matters,香蕉视频直播� said Dr. Ineka Whiteman, head of research and medical affairs for the Batten Disease Support Research and Advocacy Foundation.
香蕉视频直播淎ny brain cells that Charleigh loses from today won香蕉视频直播檛 be regenerated, so every day is damaging for her right now.香蕉视频直播�
That was the "urgent" message pressed upon Health Minister Josie Osborne by Whiteman, other leading Batten disease experts and mom Jori Fales at a private meeting July 4.
At the meeting, the health minister was presented with information not included in the Canada香蕉视频直播檚 Drug Agency review, which was used to support a decision by the Expensive Drugs for Rare Diseases committee (EDRD) to end Pollock香蕉视频直播檚 funding for Brineura.
Fales says the minister was receptive to the information and said she would pass on the information to the EDRD, but did not commit to a timeline for next steps.
Despite remaining in limbo, Fales says she is trying to remain positive while also managing her expectations.
香蕉视频直播淚'm just hopeful that with all of the new information, the right thing will be done,香蕉视频直播� she said.
香蕉视频直播淲hen I asked the minister, face-to-face, if this is a final 香蕉视频直播榥o香蕉视频直播�, her reply to me was, 香蕉视频直播業t's a no for now.香蕉视频直播櫹憬妒悠抵辈
Also shared with the minister was information about new clinical scoring criteria 香蕉视频直播� which is yet to be published 香蕉视频直播� to replace the 香蕉视频直播渃rude and outdated香蕉视频直播� assessment system used by the province to make the decision to end Pollock香蕉视频直播檚 funding.
The new criteria take into account the 香蕉视频直播渙ngoing benefit of the drug,香蕉视频直播� explains Whiteman.
It's a point long argued by Whiteman, Fales and Pollock香蕉视频直播檚 health team, who say the 10-year-old is still benefiting from the drug 香蕉视频直播� listing relief from daily seizures as one of the benefits.
香蕉视频直播淎nd that was the problem with the CDA review 香蕉视频直播� they were extremely limited in what they included as evidential information in the review,香蕉视频直播� said Whiteman.
香蕉视频直播淭hey did not reach out to the experts elsewhere that have designed this scale, that have been involved in the clinical research of this drug for a decade.
香蕉视频直播淚t seems very negligent that they haven't reached out to those particular experts in this case, given the gravity of the decision that they have now made, which means that a little girl's life is essentially over.香蕉视频直播�
Whiteman says the minister was told a decision is needed by Wednesday (July 9).
香蕉视频直播淪o we can pivot and figure out how we're going to get Charleigh's next infusion if the government's not going to step up to the plate,香蕉视频直播� she said.
Days before the meeting with the health minister, Pollock celebrated her 10th birthday, July 2.
The family marked the day doing what Pollock loves most 香蕉视频直播� art.
A video shared on social media shows mother and daughter smiling and laughing while playing with paint.
"Watching her create, hearing her laugh, seeing her light shine so brightly 香蕉视频直播� it was the kind of joy our hearts so desperately needed," writes Fales in the video's caption.
"In the middle of everything, we made memories. Precious, beautiful moments that we will hold onto forever. So deeply grateful for each second we get to share with her."