Hers was a typical childhood, one that her mother describes as being “just so deliciously lovely and easy” — until everything changed, without warning, when she was eight years old.Her mother, Katherine Cowin, was the first to find her. “Her eyes would roll backwards in her head. She was almost a purple colour. She was unconscious. And she had a big puddle of vomit next to her.
By Grade 9, this vibrant, inquisitive child could no longer attend school. Rather than going to art lessons or swimming, she spent far too many days in hospitals, either recovering from catastrophic seizures or undergoing tests for possible solutions. “I didn’t like it. It took me a while to accept it. I felt like a cyborg,” Sophie said, flashing her good-natured sense of humour in the midst of a serious conversation.
The difficult decisions faced by the Cowins, and three other Canadian families with epileptic children who are also resistant to drugs, are the focus of a new documentary,This advertisement has not loaded yet, but your article continues below.There are about 600,000 children in North America with epilepsy, and for roughly one third of them drugs won’t stop their seizures.
“How is it possible that Canadians do not have access to the same advanced technology as American people? We must catch up. We must. We can’t be left behind,” she said.Health Canada did not directly answer a Postmedia question about whether the federal government was considering bringing the RNS technology to this country. It said only that it has not received an application from the manufacturer, “therefore this medical device is not licensed for sale in Canada.
So, although Sophie was overwhelmed by the thought of having the device put inside her head in New York, she “came around” to the need to try it.Article content Creating devices that can instead modulate the seizures is “more elegant.” But ones like Sophie’s, for example, could still be improved by, for example, making it smaller so it doesn’t protrude from the patient’s skull, he added.Article content
“I think a family and a patient are more likely to also accept a higher risk when the consequences of doing nothing are higher. And the potential benefits are significant. And so I think that’s such a hard decision for any family to make. I know it was hard for Sophie’s family to make. But they felt that in some ways, this was their only hope.Since the surgery, Sophie’s seizures are less severe, requiring far fewer intensive care ward visits and vastly reducing her recovery time.
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