A former B.C. junior hockey player who has struggled with seizures for the past decade is advocating to bring a new seizure treatment option to Canada.
Daniel DelBianco, who currently lives in Coquitlam, has had epilepsy for 12 years, and was officially diagnosed with drug-resistant epilepsy approximately three years ago. After trying multiple unsuccessful medications and surgeries, he is now reaching out for a solution that is not available in Canada.
DelBianco played with the British Columbia Hockey League (BCHL)’s Alberni Valley Bulldogs and Trail Smoke Eaters. It was shortly after his time with the Alberni Valley Bulldogs that he experienced his first seizure.
“He would have grand mal seizures in his sleep,” explained his mother, Kelly DelBianco. “He would just wake up with his body sore, not knowing what had happened.”
But around three to four years ago, the seizures changed. Daniel started getting complex partial seizures, where he will stop what he’s doing and stare blankly into space. His symptoms are “very discreet,” he said, so most people don’t realize he’s having a seizure.
“I’m physically there, but in my head I’m not there,” Daniel explained. “I basically blank out for five to 10 seconds. I’m like a robot—I don’t know what’s going on at all.”
For Daniel, the seizures have been life-changing. He is unable to hold down a job because the seizures could occur at any time and cause harm to himself, or others. He is also unable to drive. He was able to gain a coaching job with a Junior B hockey team on the mainland, but this doesn’t offer him a living wage.
“It’s more of a hobby than anything,” said Daniel. “It’s for the love of the game, really. Without hockey, I don’t know where I’d be.”
Daniel has been talking with his doctors and surgeons to figure out what his options are, and now both the DelBiancos believe his best option is implanting a Responsive Neurostimulation (RNS) device in his skull. This device monitors the brain’s electrical activity and when activity that could lead to a seizure is detected, the device delivers a pulse of electrical stimulation that can stop the seizure before it begins.
“Daniel has a very specific area [of his brain] that this would work on,” said Kelly. “He needs something targeted.”
If the DelBiancos are able to fundraise enough money, they hope to travel to the U.S., where the RNS procedure has been offered since 2015. Unfortunately, the medical fees will be “extremely high.” Kelly has started up a GoFundMe for her son that has already raised more than $50,000.
“I get emotional because it’s actually been quite incredible,” said Daniel. “A lot of old friends and old teammates of mine that I may not have talked to in a long time have reached out. There are people that don’t even know me, but saw my story. It’s unreal.”
But the DelBiancos’ ultimate goal is to bring the RNS device to Canada.
“We want people to realize that this device has been in the U.S. since 2015,” said Kelly. “It’s nowhere else in the world. Daniel really wants to let others know that this is there for them. In Canada, we need to get the ball going.”
Daniel agreed that there are many other people in Canada who have drug-resistant epilepsy and this is a solution that could change their lives.
“There are lots of people that may have this issue, or may have this issue in the future,” he said. “I’m trying to push to get it into Canada. There are lots of people that have reached out [to me] with this issue and their stories haven’t been told.”
In the meantime, Daniel’s GoFundMe can be found online at www.gofundme.com/f/responsive-neuro-surgeryrns-financial-aid.