2023-05-24 16:36:14
A 6-year-old girl suffering from a neurodegenerative disease finds hope for a cure, thanks to a clinical trial at the CHU Sainte-Justine. His brain tumor is now gone.
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The little girl from Saint-Alexis-Des-Monts, in Mauricie, Olivia, was only one year old when she was diagnosed with neurofibromatosis.
This genetic disease affects coordination, vision and hearing. Olivia was at risk of going blind.
Three years ago, the only treatment available was chemotherapy.
“She started at 2 years old. She had 75 treatments. It was every week at Ste-Justine. She had intravenous treatments, we installed a PAC. We had good results, but nine months later, she had a recurrence,” explains Livia’s mother, Joannie Pagé.
Screenshot | VAT News
Dr. Sébastien Perreault, neurologist and neuro-oncologist at the CHU Ste-Justine, offered them to take a drug that was currently in clinical trial with a hundred young participants.
The family decided to accept the proposal. The girl had to take a syrup at home without having to go to the hospital, for 18 months.
“It was not developed for neurofibromatosis, it was more for other types of cancer, especially melanoma. It is more common lung cancer in adults. But in neurofibromatosis and in types of brain tumours, this pathway is also activated”, specifies Dr. Perreault.
Screenshot | VAT News
The Pediatric Research Foundation
Olivia would not have had this chance without the Pediatric Research Foundation at CHU Ste-Justine.
It raised funds, $400,000 to advance Dr. Perreault’s research.
“That’s wonderful! Without research we would not be here to talk to you today. Would she be blind? Maybe. For us, it has changed our quality of life. It’s been stable for a year, we were able to resume our lives and leave it behind us, ”comments Olivia’s mother.
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