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)B次元官网网址檚 Alberni Valley Bulldogs and Trail Smoke Eaters. It was shortly after his time with the Alberni Valley Bulldogs that he experienced his first seizure.
B次元官网网址淗e would have grand mal seizures in his sleep,B次元官网网址� explained his mother, Kelly DelBianco. B次元官网网址淗e would just wake up with his body sore, not knowing what had happened.B次元官网网址�
But around three to four years ago, the seizures changed. Daniel started getting complex partial seizures, where he will stop what heB次元官网网址檚 doing and stare blankly into space. His symptoms are B次元官网网址渧ery discreet,B次元官网网址� he said, so most people donB次元官网网址檛 realize heB次元官网网址檚 having a seizure.
B次元官网网址淚B次元官网网址檓 physically there, but in my head IB次元官网网址檓 not there,B次元官网网址� Daniel explained. B次元官网网址淚 basically blank out for five to 10 seconds. IB次元官网网址檓 like a robotB次元官网网址擨 donB次元官网网址檛 know whatB次元官网网址檚 going on at all.B次元官网网址�
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 doesnB次元官网网址檛 offer him a living wage.
B次元官网网址淚tB次元官网网址檚 more of a hobby than anything,B次元官网网址� said Daniel. B次元官网网址淚tB次元官网网址檚 for the love of the game, really. Without hockey, I donB次元官网网址檛 know where IB次元官网网址檇 be.B次元官网网址�
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 brainB次元官网网址檚 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.
B次元官网网址淒aniel has a very specific area [of his brain] that this would work on,B次元官网网址� said Kelly. B次元官网网址淗e needs something targeted.B次元官网网址�
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 B次元官网网址渆xtremely high.B次元官网网址� Kelly has started up a GoFundMe for her son that has already raised more than $50,000.
B次元官网网址淚 get emotional because itB次元官网网址檚 actually been quite incredible,B次元官网网址� said Daniel. B次元官网网址淎 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 donB次元官网网址檛 even know me, but saw my story. ItB次元官网网址檚 unreal.B次元官网网址�
But the DelBiancosB次元官网网址� ultimate goal is to bring the RNS device to Canada.
B次元官网网址淲e want people to realize that this device has been in the U.S. since 2015,B次元官网网址� said Kelly. B次元官网网址淚tB次元官网网址檚 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.B次元官网网址�
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.
B次元官网网址淭here are lots of people that may have this issue, or may have this issue in the future,B次元官网网址� he said. B次元官网网址淚B次元官网网址檓 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 havenB次元官网网址檛 been told.B次元官网网址�
In the meantime, DanielB次元官网网址檚 GoFundMe can be found online at .
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