13 hours ago
‘Wrong side of history': B.C.'s decision not to cover terminally ill girl's treatment met with sharp criticism
In a social media post an emotional mother is reacting to the news B.C. will not continue funding an expensive drug treatment for her nine-year-old daughter's rare disease.
Charleigh Pollock suffers from Batten disease, a rare and fatal neurodegenerative disorder. Her mom, Jori Fales, choked back tears while providing an update on her daughter's final treatment.
'Our family is heartbroken,' said Fales. 'We are processing this news and at this time there just not much else I can say.'
Racked with grief, Fales addresses her daughter directly.
'I'm just really sorry Charleigh and we love you so much,' she said.
The emotional cascade came Wednesday, after a message from B.C.'s Health Minister Josie Osborne on saying the province will no longer cover a drug called Brinearu.
'There is no evidence to support changing the discontinuation criteria or to support the ministry continuing to provide coverage … given the advanced stage of Charleigh's condition,' said Osborne.
But Charleigh's mother says the treatments for a disease that will eventually kill her daughter are still working.
'I want the facts to be straight here,' Fales said. 'My daughter is not in advanced decline and she has been stable for years on this medication. So, that comment made my blood boil yesterday.'
After several extensions from the province, Thursday was the nine-year-old's final infusion treatment with the costly drug.
'I took a picture this morning for her last infusion, and she has a huge smile on her face,' said Fales. 'Everyone's heart is breaking in the hospital, and this is just a really sad day for everyone.'
Lori Brown, president of Batten Disease Support & Research Association Canada, says Charleigh is the only child that she is aware of to have been taken off of the drug by anyone other than their medical team or parents.
'B.C. is on the wrong side of history if they stick with this decision,' said Brown, adding that the province's decision has sent shockwaves through the small yet global Batten Disease community.
'They're rattled, they hear that one child is being taken off and they say, 'OK, what about my child?'
What lies ahead for Charleigh is unknown, but her mother says she expects to have to make some heartbreaking decisions and face a devastating reality.
'Charleigh turns 10 in two weeks and I know in my soul we will not see her 11th birthday, and I am angry about that,' said Fales.
