A family from the island of Vancouver fights to find access to a rare drug that has changed their lives on their final phase.
Charleigh Pollock, nine, was diagnosed with a neurological disorder called Cassetteor CLN2, in 2019.
She has developed convulsions and a loss of mobility and started to decrease quickly – until it was placed on a medication called Brrineexplained his mother Jori Fales.
The infusions twice months of the drug, which cost around $ 1 million a year, stabilized Charleigh and left his crisis.
“She is booming and has an excellent quality of life and we are very grateful to have had it on these infusions in the past five and a half years,” said Fales.
But last week, the family had a new devastator.
Charleigh’s doctor informed them that the provincial government had interrupted the financing of treatment.
“If the drug is interrupted, the effects on Charleigh will be catastrophic,” said Fales.
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“She will have crises again, her organs will start to close, she will need aspiration to breathe … It means that she will suffer horribly and be put to death earlier.”
The decision came despite the fact that the Charleigh medical team was unanimous in support of its continuous treatment, said Fales.
Fales said the province had told him to go through an appeal process on the decision.
But she said that Charleigh’s final infusion is scheduled for February 27 – just two weeks old.
She said that it is clear how long the call process could take or if it even succeeded, letting the family fear the worst for their daughter while the clock bangs from her last infusion.
“Someone has the power to reverse him immediately,” she said.
“Crossing a call process takes time is exhausting, and we will not know when the answers will come.”
The situation drew the attention of the family deputy, the conservative of British Columbia Brennan Day, who wrote to the Minister of Health Josie Osborne to protest.
“Stop the treatment of Charleigh will have horrible consequences,” wrote Day.
“The justification for the decision of the Ministry of Health is not clear … Other provinces continue to finance Brineura, making British Columbia the only province which establishes this dangerous and unacceptable precedent.”
The province did not make Osborne available Tuesday for an interview.
In a statement, the Minister of Health said that she was sympathizing “deeply” with the family.
“While coverage decisions within the framework of the British Columbia Offly Medicines program are taken by medical experts according to the clinical criteria and recommendations from the Canadian drug agency, I ordered the ministry of The health to review all the facts of this case urgently and to determine whether the continuous treatment of treatment can have quality of life for Charleigh, ”she wrote.
In the meantime, Fales has said that the outpouring of support from his community and foreigners was overwhelming.
She said that the family continues to hold hope that the decision will be canceled.
“I really feel in my heart that Charleigh will tell us when she is ready to rest,” she said through tears.
“This life is quite painful, having to raise a child in the final, and now have to fight to keep it in this world – like, allow us to resume our life and have our child for the time we left And leave it painless.
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