The family of a Vancouver island is struggling to regain access to a rare medicine, which has a effect on their sick daughter.
The nine -year -old Charlie was diagnosed with neurological disorder Datton diseaseOr in CLN2, 2019.
She created seizures and movement loss and began to fall fast – until she was put on a drug BrinuraHis mother Jori Fales explained.
Two -month injections of the drug that costs about 1 million per year per year confirmed Charlie and lack his seizures.
“She is thriving and has a great quality of life. We are very grateful to keep her in these injections for the past five and a half years,” Fales said.
But last week, the family got news of disaster.
Charlie’s doctor told them that the provincial government had stopped the funds for treatment.
“If the drug is stopped, the effects on Charlie can be disaster,” Fales said.
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“She will have seizures again. Her organs will start to close. She needs to suck her breathing … This means that she is going to suffer.
The decision came, though Charle’s medical team was unanimous in support of continuous treatment, Fales said.
Fales said the province had told him to go to the appeal process.
But Charley’s final infusion is scheduled for February 27 – two weeks away.
It is not clear whether the appeal process can be taken or it is successful, and the family is afraid of their daughter because the clock descends into its last injection.
“Someone who has the power to change this immediately,” he said.
“It is time to take over the appeal process. It’s tired. We don’t know when the answers will come.”
This situation is the MLA of the family, BC. Conservative Brennan has attracted the attention of the day, he opposed Health Minister Josi Asborn.
“Stopping Charley’s treatment can have horrific consequences,” Day wrote.
“The justification for the decision of the Ministry of Health is unclear … Other provinces are constantly funding Brinura so that the only province has set this dangerous and unacceptable precedent.
Asborn was not available for an interview on Tuesday.
In a statement, the health minister said that he was “deep” with the family.
“I have ordered the Ministry of Health to determine whether it is urgently reviewing and treating all the facts of the case, even though medical experts are taken by medical experts and the recommendations of the Canada’s pharmaceutical system,” Charlie may have quality benefits to Charlie, “he wrote” Charlie may have quality benefits for rare diseases. ” .
Meanwhile, Fales said it was huge to express support from his community and strangers.
He said the family continued to hold the hope that the decision would be reversed.
“I really feel in my heart that Charlie is going to tell us when he is ready to rest,” he said in tears.
“This life is sufficiently painful, raising a child. Now we have to struggle to keep her in this world-like this, we will get back our life. We will get our child for the time we left.
& Copy 2025 Global News, Section of Chorus Entertainment Inc.
