The mother of a nine-year-old girl on the terminal phase said that she was still dealing with the news she had received from the British Columbia government on Wednesday.
“I think we are still in shock,” said Jori Fales.
His daughter, Charleigh Pollockhas a neurological disorder called Cassette This leaves him severe crises and a recurring loss of mobility, and will end up short-circuiting his young life.
The British Columbia Government had funded a drug called Brineura, which, according to the family, stabilized the state of Charleigh and radically improved its quality of life since its diagnosis of 2019.
Wednesday, The government has told Charleigh’s family This “Charleigh met the judgment criteria” and its last dose funded by the government would be given on Thursday.
“I didn’t think it would be the result after the last five months,” said Fales.
“So we always deal with. The emotions went from pure sorrow to anger to sadness. It’s right, we have been on roller coaster in the past 24 hours. Today is a really sad day, taking Charleigh to the hospital for his last infusion.
“It’s been six years in fact with my daughter. It’s difficult. “
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Charleigh is one of the under 20 children in Canada with this rare condition. She is the only patient in British Columbia and was diagnosed only a few weeks before her fourth anniversary.
“There are a lot of tears this morning,” said Fales. “But you know who smiles?” Charleigh. She smiles. “
She added that she wanted to have received more remarks than the funding ended because they did not have time to cry.
“I think it’s a bit without heart. We could have used a little time to treat and prepare. I mean that there is no way to really prepare to lose the medication that advances your daughter’s quality of life, but if we had time. ”
Fales expressed his frustration because no one knows what it is to live in their world.
“In 14 days, the drug will have left his brain, his system,” she added.
“We are not really prepared for what will happen.
Fale said that her daughter’s right to live was removed.
“It should have always been the decision of his medical care team and his family and Charleigh. And none of this has happened here. And I’m really sorry for my daughter. She is disappointed and we have to wear this now for the rest of our lives and it hurts a lot. ”
Fales said Charleigh did not deserve this disease or this result and all they can do is love it and make sure that every day counts.
She said she Continue to share Charleigh’s trip online.
“I’m not going to hide what will happen. I think it is important to advocate it and the awareness of this disease that people see what it is.
“There is always hope for a remedy one day. It will obviously not be in Charleigh’s time, but we always have hope that other families will not have to cross this. ”
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