Coquitlam man with epilepsy advocates for surgical seizure treatment only available in the U.S.

29-year-old Daniel DelBianco was a teenager playing major junior hockey when he experienced his first seizure. In the decade since, he’s been diagnosed with a seizure disorder that impacts every part of his personal and professional life.

“I like blank out for five to 10 seconds,” he said, adding the seizures are unpredictable and resistant to epilepsy medication. “It’s very hard to hold a normal job, especially in areas where I put myself in danger or others in danger.”

In July, DelBianco had two surgeries where doctors implanted electrodes in his brain to try to pinpoint the exact origin of his epilepsy. There was hope that part of his brain could be removed in order to stop the seizures, but the source turned out to be a section of his brain responsible for speech and memory, which can’t be operated on.

“After that second one, they said they couldn’t do anything,” said DelBianco.

“That was the chance to get rid of his seizures, and that didn’t happen,” added his mother Kelly DelBianco.

Doctors at Vancouver General Hospital told the family there is one last treatment option called Responsive Neuro Stimulation, or RNS.

“Two electrodes implanted deep in the brain essentially talk to each other, where one detects a seizure, the onset of a seizure, and the other one stimulates an adjacent part of the brain in an effort to mitigate the onset of the seizure,” said Dr. Judy Illes, a professor of Neurology at UBC.

“I’ve been told by my doctors that it works. They suggested I go do it,” said DelBianco. But the family was devastated to learn RNS is only available in the United States.

“This is the one the neurosurgeon recommends, this is the one that neurologist recommends, and their frustration is as high as our frustration that it’s not here and we can’t get it in Canada,” said Kelly.

The RNS surgery is available in Seattle, but at a steep cost. The family figures the procedure and follow up care will set them back at least $350,000. They’ve launched an online fundraiser to help pay for Daniel’s surgery, but what they really want is for the company that manufacturers the RNS device to bring it to Canada.

“When can we get this here? When can we get the ball rolling? What will Health Canada do to help us get this here?” said Kelly DelBianco. 

Dr. Illes produced a documentary about new technology for people suffering from drug-resistant epilepsy, and met Sophie, a Metro Vancouver teenager who had the RNS device surgically implanted in New York and gets her follow up treatment in Seattle.

“Sophie is the only case to my knowledge of this kind of medical tourism for Responsive Neuro Stimulation,” said Illes. “We are hoping the kind of work we are doing with families and working with Health Canada, creating the documentary called Seizing Hope that we have produced, is bringing knowledge about the procedure to Health Canada, and hopefully encouraging the company to consider the human benefits in addition to the economic benefits of bringing the device to this country.”

“Sophie, I’m just so happy that she’s found a way to deal with it and cope with it and move forward with her life. That’s kind of what I am hoping to do,” said Daniel.

If DelBianco can’t get the RNS treatment, he’ll continue to live with the uncertainty of debilitating seizures that can happen with no warning, anytime and anywhere.

“I want to start a family. I want to have a job that I can sustain,” said Daniel.

“I see my son, and it really is a life unable to bloom. And I can’t describe it any other way, and it’s really heartbreaking,” said Kelly.

Unable to get treatment, Daniel is choosing to focus on advocating for RNS for other Canadians suffering from drug-resistant epilepsy.

“I’m not asking for me,” he said. “I am asking for everyone.”