Dominic’s Story
We are the Kilgour family, my husband Kyle, daughter Emma, and I, Jackie, would like to introduce you to our son, Dominic.
Now we may be a little biased but he is one of the sweetest 9-year-old boys that you could ever meet. We have often said he is a wise, old soul because of his kind and caring heart. He always knows just when we need a hug and despite all that has happened to him in the last seven years, he always has a smile on his face and loves to give a good ‘thumbs up’.
It's not easy to summarize everything Dominic has been through in the past seven years. His journey began with a febrile seizure when he was just 3 years old. At first, we thought nothing of it as they are common with toddlers but two weeks later he had another seizure and then two more seizures a week after that and we knew something else was going on. Suddenly we were thrown into a world of emergency room visits, medications, side effects, bloodwork, hospital admissions, EEG’s and the fear of never knowing when the next one would happen. In those first few months we often heard the words “he’ll outgrow them” but only a few months after his first seizure, Dominic was officially diagnosed with epilepsy and within the first year he progressed to having five different seizure types, including; tonic-clonic, tonic, absent, myoclonic and atonic seizures. Trying to explain to a toddler what was happening to him was a challenge but he made it very easy by understanding and explaining to others, “sometimes my brain has hiccups”.
We tried medication after medication without success and shortly into his journey he was deemed to have medication-resistant epilepsy which was one of the hardest things to hear about our then 4-year-old boy. But we kept trying and would never give up on him. By the time he turned 5 years old, he was having multiple seizures a day sometimes requiring rescue medications to stop them. Thirty seconds can feel like an eternity as you watch your child have a seizure. After lots of research and truthfully, in desperation, we tried Dominic on a medical ketogenic diet and it helped to decrease the number of seizures and severity. And we were able to wean him off one of his anti-seizure medications that was causing awful side effects, but it was never curative. During this time, we continued to adjust medications and even tried cannabis oil but to no avail.
Unfortunately his seizures progressively got worse and he was having hundreds of seizures a day. Just a few weeks after his 6th birthday we agreed to a surgical intervention where he received a vagal-nerve stimulator (VNS). We knew it would take months and many adjustments to the settings on it before we could see if it would help at all. Sitting in the waiting room that day, waiting for his surgery to end was one of the longest days of our life but once we saw him in the recovery room, we suddenly felt hopeful again and thought “maybe this will work”. Over the next few weeks as he healed from surgery the seizures continued to get progressively worse and he developed non-convulsive status epilepticus (NCSE). This required a lengthy hospital stay where he was in the ICU for many days because he needed to be placed in a medically induced coma to stop the seizures. His brain was essentially on fire and we were left feeling helpless because we couldn’t do anything to stop them. After twenty-four hours in a coma, his brain finally calmed down and his seizures settled. It was a strange feeling because while we were devastated seeing him in a coma, it also felt like a huge weight was lifted. It was the first and only time we have truly ever felt at ease because we knew he was safe from the next seizure.
While he was in the ICU, his neurology team was able to get special access to a medication not currently available in Canada. Each day we would slowly see improvements. He went from a boy in a coma who couldn’t walk or talk and required a feeding tube for food and medications, to our happy boy playing soccer just a few months later. We slowly saw his seizures drastically decrease and just over a year after his ICU admission, we weaned him off his cannabis oil and his medical ketogenic diet. Dominic currently takes 3 anti-seizure medications to help stop hundreds of seizures daily but at night he continues to have seizures only while he sleeps which causes him to wake up scared and confused. While we celebrate that he has less seizures, Dominic having nocturnal seizures puts him at greater risk for SUDEP which stands for Sudden Unexplained Death in Epilepsy.
Through his epilepsy journey, Dominic has been referred to both as a ‘mystery’ and a ‘miracle’. His seizure progression has been atypical and he currently has a diagnosis of Lennox-Gastaut Syndrome (LGS), but his neurology team believes he has an unknown genetic condition. Dominic is now a part of three different studies, including one that will continue to study his genetics. We have exhausted all genetic testing available for epilepsy and we hope to one day to have a diagnosis but for now, we will just stay the course. Our motto is to be grateful and take things one day at a time, sometimes a moment at a time.
The past two years we been blessed to watch our son grow and learn along side his younger sister, Emma, who he adores. Truthfully, Dominic amazes us every day because he shouldn’t be able to do all the things can based on how much seizure activity is occurring in his brain. Even though he still battles nighttime seizures every single day, we are so grateful for the good days. He has come so far in the past couple years and we are so proud of him. We know he will likely have many challenges in life, but he will always have us by his side. We are so thankful for our family, friends and community for supporting our son - together we are Team Dominic.
Now let us share more about our sweet boy Dominic, who we call ‘Bubba’ who will turn ten years old this month. He gives the best hugs, always sees the good in others and has the best silly dance moves. He has worked so hard the past two years to learn how to read, he enjoys playing soccer, swimming, video games and is a Tae-kwondo student who recently earned his grey strip belt and is working hard to earn his yellow belt. He also enjoys playing with his Hot Wheels cars , Nerf guns and Lego, and recently he started to collect Pokemon cards. Dominic has some learning challenges including difficulties processing information and difficulties focusing at times due to his daily seizures and from medication side effects. As parents, it has been a struggle to help others understand these difficulties for Dominic. It also creates some challenges for Dominic as he navigates social situations and relationships with friends. We try to encourage Dominic to not look down on his challenges but to instead see that his differences are what make him unique. He knows his brain works a little differently than most of his peers, but that it is okay. There may be things he cannot do, but there are so many things that he can do.
For the past five years, we have participated in our local “Seize the Day” walk because we want to help and show Dominic that he’s not alone. The first year we attended, he looked around at all the people wearing purple and said “there’s other people here with epilepsy like me? Wow!” It was a moment we will never forget. This past November our family had the privilege to attend the Epilepsy Expo and Awareness Day at Disneyland. We gained so much knowledge from the expo, met other epilepsy families like ours and we made some amazing memories.
We live with the reality that one day Dominic may no longer be with us, so we want to make the best of every day.
By sharing Dominic’s story, we hope to help educate, raise money for a cure and hopefully help to end the stigma around seizures.
Finding a cure for epilepsy would mean an end to all the sleepless nights as we race to Dominic’s room as he seizes, it would mean his little sister wouldn’t struggle with anxiety and fear losing her brother, it would mean greater independence and a long future ahead for our son. Like all parents and siblings of children with epilepsy we know that our superhero may go to sleep one night and not wake up after a seizure. Our son may be one of the 1 in 100 Canadians who battles epilepsy, but to us he’s one in a billion and we fight epilepsy as a family.
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.