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Elias


This story begins with this boy. His name is Elias. He is obsessed with any sport that has a ball or a whistle, he loves Jesus and to be around others. He is the most easy going, loving, and delightful little boy. He was born on September 11, 2017 following a typical pregnancy and delivery. Elias became an international traveler at 3.5 weeks and his interest in the world continues to this day, especially in his interest in flags. Elias is our first child. As first time parents, we were very excited to introduce him to all our friends and family and to have him join us in our pursuit of a life of fun and adventure.


Soon after Elias turned 7 months he got to Disneyland for the first time. It was so fun to experience the wonder alongside him. He loved meeting the Disney characters and was easily captivated by the music and performances. It wasn’t long after returning home from this trip that we noticed Elias having these quick head drops. We decided to take him into a walk-in clinic where we walked out with little information or much to worry about. However, the head drops continued and so did our concern.


So days later, we took him to emergency. There our concern was taken much more seriously. Elias saw a neurologist and quickly went through a series of tests (EEG, MRI, Spinal Tap, blood work, etc.). The results came back and we were told that the MRI was normal, but that he had myoclonic epilepsy (which was the best result, at that point). The neurologist had said that it could likely be regulated with medication and that he might outgrow it.


Despite this unexpected diagnosis and Elias’ continuous head drops (between 60-100/per day), with the cautious blessing of the neurologist, we continued with our long anticipated travel plans. One month later, we were off on a 6 week round-the-world trip to Hong Kong, Sri Lanka, Norway and Sweden. We look back on that trip and are grateful for all the adventures we experienced together because in hindsight it was a very brave journey and an experience that we will never do again.


We went from trains, planes and tuk tuks to riding in an ambulance. It was less than 12 hours after returning home that Eilas had his first tonic clonic seizure (26 minutes). It was from that point, that we later realized, our life dramatically changed. We continue to take each day in stride, we persevere and will continue to seek out the best treatment options for our boy. Weeks later (at 9 months old), Elias was admitted to the hospital and he was put on a strict ketogenic diet. He went from exploring newE foods and being breast fed to a heavily prescribed diet that consisted of a lot of whipped cream and olive oil. As parents, we found ourselves measuring and weighing every thing he ate (to the tenth of a gram) and scraping up every drop and making sure he ate it. This was incredibly challenging but also very worth it. After beginning the diet we noticed Eias’ daily head drops nearly reduced in half, going from 80-100/day to about 40. How incredible!


Elias continued to grow and develop meeting several milestones yet also showing some delays in gross motor skills and speech. After genetic testing we learned that Elias had a mutation in the SCN1A gene, regulating the sodium channel in the brain, and that this mutation is found in approximately 85% of persons with Dravet’s syndrome. We later found out that dad has the mutation as well, but a much less severe expression.


It was between the ages of 1 and 3 that Elias experienced several tonic clonic seizures, ambulance rides and hospital stays. At 18 months, Elias became a part of Dr. Huntsman’s research study using CBD oil as a method of seizure control. It was at the peak dosage increase that Elias’ daily seizures were controlled. This was a miracle; absolutely life changing! Break through tonic clonic seizures and ambulance rides were sadly still a part of our reality but the daily bonks and permanent bruises on Elias’ forehead disappeared.


In November 2019, Elias had a 45 minute fever induced tonic clonic seizure that required heavy medications and intubation to get it under control. He had a three-week stay in ICU and peds and during that time he did not return to his baseline behaviours. Before admission he had just begun walking and talking more but he experienced a significant regression in motor skills. As a result, I had to take a leave as a full-time teacher to direct more care towards our son.


Medical appointments and regular visits to therapies became our outings (until Covid lockdowns). We began limiting our exposure to public areas with hopes to reduce the risk of infections and all the stressors that go along with it. Little did we know that months later the whole world would get to experience this type of life with us. The strain of not being able to connect with others and travel was challenging but it was also special to have so much time with just our little family. Elias welcomed his little sister into our home in September 2020. The love and sibling bond was quickly established and well nurtured during that time.


In the last few years, the frequency and severity of Elias’ seizures have thankfully decreased, but he has become much more susceptible to viral infections, pneumonia and has been diagnosed with asthma. It has been these conditions that have been the reasons for his hospital admissions more recently. Despite all the pokes, daily medications, special diet, limitations in gross and fine motor skills and being considered ‘non-verbal’ Elias has proved to be incredibly resilient and so easy going. He makes himself understood and he makes and gets the funniest jokes. He is a true inspiration and a ray of light to pretty much everyone he meets!


Yet, as parents it is easy to feel down about having to change your expectations and your day to day life. Nevertheless, we try to always remember that the one fighting the greatest fight is our son and we need to be present in that fight with him.







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