Shock, devastation, sadness and fear are some of the many emotions the family of Langford girl Charleigh Pollock have experienced in the 24 hours after they received the news the province is pulling funding for treatment of the nine-year-old香蕉视频直播檚 terminal illness.
香蕉视频直播淚t香蕉视频直播檚 a roller-coaster,香蕉视频直播� says mom Jori Fales, speaking to Goldstream Gazette June 19 from Victoria General Hospital, the day her daughter received her last province-funded infusion of the drug Brineura.
香蕉视频直播淭oday the feeling is anger.香蕉视频直播�
Pollock is the only child in B.C. living with the rare genetic disorder Batten disease. She has been receiving the bi-weekly enzyme replacement treatment, funded by the province for nearly six years, costing around $1 million a year.
The day before Pollock香蕉视频直播檚 last infusion treatment, the Ministry of Health said June 18 it would be standing by a decision made in February that the nine-year-old no longer meets the criteria to receive Brineura.
Fales says she only found out about the decision from her daughter香蕉视频直播檚 physician minutes before she received a flurry of messages from journalists, offering the family their condolences.
香蕉视频直播淚t's sad to know that there was already a press conference planned before the family was even informed 香蕉视频直播� it香蕉视频直播檚 all been very impersonal,香蕉视频直播� she said, adding that she has never spoken to anyone from the Ministry of Health, including Health Minister Josie Osborne.
Intended to slow the progression of the disease, Brineura has given Pollock a life free from daily seizures, says Fales.
However, a review by Canada香蕉视频直播檚 Drug Agency (CDA), found 香蕉视频直播渋nsufficient evidence香蕉视频直播� to make definitive conclusions about the potential benefits of the drug on quality of life, seizure control, and mortality outcomes.
The ministry has also made it clear Brineura is not an anti-seizure medication.
The CDA香蕉视频直播檚 review also found no new evidence that justified changing the discontinuation criteria for Brineura, first established in 2019 香蕉视频直播� something mom Fales has described as "outdated."
Ultimately, the Expensive Drugs for Rare Diseases expert committees found the nine-year-old香蕉视频直播檚 condition meets the discontinuation criteria.
香蕉视频直播淢eaning there was no evidence to support the ministry continuing to provide coverage for Brineura, given the advanced stage of Charleigh香蕉视频直播檚 condition,香蕉视频直播� said a statement by Osborne.
Fales says hearing the minister talk about her daughter香蕉视频直播檚 condition made her 香蕉视频直播渂lood boil.香蕉视频直播�
香蕉视频直播淚 need people to know she is not in an advanced state of her disease, and she is in a stabilized position due to her medication that she's been receiving,香蕉视频直播� she said. 香蕉视频直播淐harleigh hasn't had seizures in years.香蕉视频直播�
With her final dose of Brineura now complete, Pollock香蕉视频直播檚 future is uncertain, says Fales, who disagrees with the ministry that the drug is not effective in managing her daughter香蕉视频直播檚 seizures.
香蕉视频直播淯nfortunately, time will tell, and everyone is going to see exactly what's going to happen to Charleigh once this medication is removed,香蕉视频直播� said Fales. 香蕉视频直播淪he's being made an example, and it's unfortunate.香蕉视频直播�
She says the timeline for her daughter香蕉视频直播檚 life expectancy has now been 香蕉视频直播渆xceptionally speeded up.香蕉视频直播�
香蕉视频直播淎nd it wasn't even our choice,香蕉视频直播� says Fales, who believes Pollock香蕉视频直播檚 medical team should have been at the forefront of the decision-making process.
香蕉视频直播淭hey still recommend she continues to receive treatment.香蕉视频直播�
Following the news, the family has been met with a wave of support from the public. Hundreds of comments online from folks expressing disbelief at the ministry香蕉视频直播檚 decision.
The family of Oak Bay's Simon Hoskins, who lives with the rare progressive disease mucopolysaccharidosis (MPS) Type IV, has also spoken out in support.
Like Pollock, Hoskins receives province-funded treatment 香蕉视频直播� a synthetic enzyme infusion that helps slow the progression of his disease, allowing him 香蕉视频直播渢o retain the best quality of life possible.香蕉视频直播�
香蕉视频直播�(Charleigh) and her family deserve so much more, we are holding them close as the news hits so very hard today,香蕉视频直播� the Hoskins family wrote in an emotional Instagram post.
MLA for Courtenay香蕉视频直播揅omox and opposition critic for rural and seniors health Brennan Day has also slammed the province香蕉视频直播檚 decision, calling it 香蕉视频直播渕orally indefensible.香蕉视频直播�
香蕉视频直播淚t香蕉视频直播檚 appalling that this government believes recreational drug programs are a higher priority than giving a young girl a fighting chance,香蕉视频直播� he said in a statement, calling on the province to immediately reverse the decision.
The public support has brought some comfort to Pollock香蕉视频直播檚 family.
香蕉视频直播淲e're just very grateful for everyone's support and love, and they're very appreciated,香蕉视频直播� said Fales.
As for what香蕉视频直播檚 next for the family, Fales says they need time to process and accept what lies ahead.
香蕉视频直播淎nd we'll continue to make Charleigh our priority,香蕉视频直播� she said, explaining that her daughter has been shielded from what is happening.
香蕉视频直播淛ust like every day, she wakes up with a smile on her face and is a happy little girl 香蕉视频直播� today is no different.香蕉视频直播�
