Responsive Neuro Surgery (RNS) & Financial Aid

Hi, my name is Kelly DelBianco from Vancouver, BC, and I am fundraising for my son, Daniel, his health, and wellbeing.

Daniel has dealt with 12 years of epilepsy, and he was officially diagnosed with drug resistant epilepsy approximately 3 years ago. I will never forget the reaction of confusion on his face, like he had seen a ghost. He went from 9 years of controlled seizures with medication, had his career set and was ready to move out to live his own adult life. Unfortunately, battling to live a normal life, he is on 18 or more pills a day and has been trying multiple medications to find an answer or solution to this ongoing puzzle which has not fully stopped his seizures. This summer, Daniel underwent multiple Depth Electrode brain surgeries for placement to fully capture his seizure locations. We were told he is a complicated case, and towards the end of his 17-day admission, multiple doctors/surgeons explained they could not surgically remove the seizure zones in his brain. The removal may cause more harm than good because of the risks to the language centre of his brain. The Epileptologist’s and Neurosurgeon's both recommended Responsive Neurostimulation surgery, also called RNS. Sadly, this device and surgery is not available in Canada yet but is available in some epilepsy centres in the USA.

In the USA medical fees without coverage are extremely high, any donations will be greatly appreciated to support Daniel to move forward in his fight for a treatment as well as aid him financially in his day-to-day life.

Daniel's Story, Love Mom.

Daniel was born on March 17, 1994, a healthy baby boy. He passed all his childhood milestones and grew into a well-rounded young man. Daniel has always had a passion for hockey and began playing at 5 years old. By the time he was 15, he was beginning to get noticed within the hockey community and at age of 16 he began playing Junior A hockey for the Trail Smoke Eaters. This meant he was away from home and learned responsibility for himself. It wasn't until age 17, when he had finished up his year with the Port Alberni Bulldogs, that we believe Daniel had his first unwitnessed seizure. It was about 6 months after that when I was sitting downstairs, and I heard Daniel yell from upstairs. I yelled up to his room and he didn't respond. Immediately I ran up the stairs and I found him in his bed in a full tonic-clonic seizure, also known as a grand mal seizure. Like most mothers would do, we went straight to the Emergency Room at the hospital, and we were referred to a neurologist. Daniel went through multiple tests. They did an EEG and MRI but found nothing. Sometimes people can just randomly have a seizure and not have any more in their lifetime. Unfortunately, in Daniel’s case, the seizures didn't stop. He was diagnosed with sleep epilepsy and put on medication, which didn't fully work at first, but with the proper dosage they stopped and have been under control since. We all took a much needed sigh of relief and thought everything was fixed. How wrong we were.

What came next were seizures called complex partial seizures. During the seizure, Daniel moves his chin downward, turns his head to the left with his eyes open and some physical movement. He "blanks out" for 5-10 seconds and does not know what has happened. It wasn't until he had one in front of his Neurologist and had been on several medication trials that he was then referred to the Vancouver General Hospital Epilepsy Unit. His Epileptologist gave him every test known within the epilepsy field. These tests showed no masses or lesions in his brain. He endured two 5 days stays within the VGH Epilepsy Unit for more in depth testing on these unique seizures. These tests indicated that the seizures occur on the left side of his brain, but they were not sure if it stemmed from the frontal or temporal lobe. The next step was to have brain surgery to place depth electrodes in specific areas of his left brain to find the starting point of his seizures. If they could find the starting point of the seizures they would be able to remove that part of the brain and he would have a high chance of never having a seizure again or at least being able to control them with medications. We were told it would be around 2 year wait for the surgery.

Daniel was supposed to go in for his Depth Electrode Placement in about one year from now. At least that’s what we were told based on his position in the wait list. Now, I want to tell you that the epilepsy unit at VGH has only 4 Epilepsy beds for all of British Columbia. So, while it may seem things moved quickly for Daniel, it has been a long wait. We live in a suburb of Vancouver, BC and were placed on the call-in list in case another patient couldn't make it. Luckily, in July 2023 due to a cancellation, Daniel was called in for brain surgery. We had one weeks’ notice. To say we were anxious and nervous was an understatement.

The day of the surgery came, and Daniel faced it with his typical "let's go attitude" which is who he had become over the years. No matter how many times Daniel was told anything negative about his epilepsy, he may be upset, sad or angry like any human may feel. But the next day or even a couple hours later he was Mr. Positive again because he knew this was his life and he owned all the challenges he was faced with. His father and I knew this surgery would be tough on us, but he looked like a warrior, he even had an outfit picked out for when they would let him out of VGH. He told me the outfit is "next to the Nike jacket in the closet, don't look!" I found out later it was a black t-shirt with the big, crested Superman "S" logo on it. His father and I were a wreck and were trying not to show him. I am 100% sure Daniel knew but he just didn't want to show it physically because he knew it would have made us emotional. I will never forget, Daniel said to us, when he was about to be wheeled into his 4-hour brain surgery, "See you in 5 seconds!! Because that is what it will feel like to me when I'm asleep!" My husband and I watched him get wheeled down the hall in his bed, him smiling, us holding back our tears. This journey with our son has been long and emotional and we prayed for a positive outcome. Everyone prayed. 

He recovered well from his surgery and had about 12-14 electrodes in his brain. These electrodes were then hooked up to read his brain and seizure waves. After 6 days they weren't getting a lot of physical seizures, but his brain was also having seizures without physical symptoms. After multiple tests using the electrodes, the doctors did controlled seizures in specific parts of the brain. The tests would consist of using these electrodes in Daniel's brain to be able to test every electrode area by itself at certain frequencies. During the tests, the doctors would ask him if he feels anything, or sees anything, then they would do the same thing but have him naming pictures or reading words. After testing, they decided he needed a second brain surgery to place in MORE electrodes. We would later find out this would be the MOST anyone else has had in recent history at the hospital. Of course, Daniel says, "Breaking records!" with a smile on his face. No matter the outcome my boy still smiled and respected everyone. He always wanted me to let his girlfriend and her family know he was doing well. He’s the one in the hospital and yet he is more worried about his loved ones than himself. The next day we were once again waving to our smiling son as they wheeled him to the surgery room for another 3 hour brain surgery. And yes, I cried again. It was so much for him to go through. My husband and I began to see how incredibly strong our son is. He is a resilient warrior and fighter.

After this second surgery they mapped his brain. Meaning they stimulated all the electrodes (again) that were implanted in different depths of his brain. After 14 days of him being in the hospital and 2 brain surgeries later they came to us and said we cannot offer epilepsy surgery to Daniel as it appeared that his language would be affected. We were all devastated. All the waiting, hoping, praying, positive thoughts were sucked away from us in the 5 seconds it took to tell us the news. Everything my son had gone through to this point and the hopes of a fuller life was not leading us anywhere. They recommended he could be a good candidate for surgery to implant an RNS (Responsive Neurostimulation) device. The problem is it isn’t available in Canada yet. It could take up to 5-7 years before it's available here (maybe).

Before and throughout this journey so far, Daniel's disability ("random blackouts") has made him live at home and he is unable to drive. Also, he had to leave his job as a longshoreman because of these "blackouts" and the dangers he may put others or himself in. He also paid to go to barbering school during COVID because work at "the docks" was little to none and he wanted to earn a livable wage. He earned his Barbering Certification. His father is a barber and Daniel wanted to work beside him as an extra job while things were slow at "the docks". Sadly, he worked maybe 2 months as a barber until he could not continue because of his "blackouts". Luckily, because of Daniel's hockey career he has been able to work as an assistant coach seasonally the last few years as his head coach understands his disability. However, he cannot live off this wage, this is strictly for the passion he has for the game. His life has not been able to fully blossom in the way every man wants and deserves. He is in need of health and financial aid to assist him in moving forward in his day-to-day life.

We have been looking into the RNS device and surgery. The costs associated with that include initial assessments, Neurologist’s, Neurosurgeon's, Epileptologist’s, the cost of the device, the surgery to put in the device, the multiple in-depth testing prior to surgery, hospital costs of Intensive Care Unit, Epilepsy Unit and the followup appointments required. As we work with his Epileptologist’s and Neurosurgeon’s, we are investigating the procedure within the USA and looking to see any possibilities within Europe/Asia.

Our family appreciates any donation and thanks you for your support of Daniel to help him move forward in his fight for a treatment as well as aid him financially in his day-to-day life.

Thank you,

The DelBianco's