My son, Lincoln, was diagnosed with epilepsy at age 9. He is a smart and witty boy whose laugh is extremely contagious, he has a love of sports and videogames. He had his first tonic-clonic seizure during the Superbowl of 2020, it started when he was sitting on the couch while watching the game with his dad he started making no sense and slurring his speech, it ended with an ambulance ride to the emergency room. CT scans, MRI, EEG, and blood tests resulted in a focal seizure diagnosis. He was put on a low dose of anti-seizure medication that initially worked well to control his seizures, and with no serious side effects. Our biggest complaint was we noticed he was extremely fatigued, but he never complained, and he adapted quickly returning to his active self in no time. Within a couple of months he outgrew his dose, with “breakthrough” seizures and blood tests confirming the need to increase his medication. This has happened about every 3-4 months since his diagnosis. He eventually reached the maximum dosage of his first medication and required a second medicine in addition. He has what is considered “partially controlled epilepsy”, he responds well to medicine initially, but it becomes less effective quite quickly. He takes a handful of medicine twice a day at strict intervals and specific times, a missed or late dose often results in a seizure, late nights or poor sleep can trigger a seizure, stress, dehydration and skipped meals are all known triggers as well. Parenting an active boy in middle school is a challenge, what grade 6 child entering middle school doesn’t experience daily stress? He wanted to attend late French immersion as well, is a team member in intramural volleyball, dodgeball, and basketball, and participates in the school community helpers’ group on a weekly basis. He is an intelligent boy who is thriving despite a slower processing speed, fatigue, and memory issues as side effects of epilepsy and his medicine. He is the epitome of resiliency, courage, strength, and spirit. Epilepsy is much more than a seizure, even on good days there is likely seizure activity in his brain. Epilepsy does not define him, but our hope is to be seizure free with no side effects.

Our goal during this month is to raise awareness, challenge myths, and help dismantle the stigma of epilepsy. We have set a goal of $500, we will be selling cookie grams, epilepsy awareness cookies, “Your Why” DIY cookie kits, and hosting a tween cookie decorating class. Together with my family of 5 and my home based business Sugar Kissed we will be spreading awareness and raising funds by selling sugar cookies.

As a parent with a child with Epilepsy I would give anything to trade places with him, all the medical testing, medication upon medication, enduring the daily side effects, the constant worry of his safety, the constant examination of every weird symptom or behaviour (do you know any middle schoolers? They can be very strange creatures on a good day!), the missed school, missed events, and the constant worry when they are not within your sight and when you’re sleeping. Epilepsy is a serious neurological disorder with no cure. There is a desperate need for more research and funding. As a mother it is my responsibility to spread awareness, help advocate, educate, and help support organizations who are trying to find a cure. I will continue to fight alongside of my amazing Epilepsy Warrior!

Since 1966, Epilepsy Canada has been dedicated to positively affecting the lives of those living with epilepsy. Our sole mandate is to raise funds for epilepsy research with the goal of finding a cure.

Up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated; the risk of premature death in people with epilepsy is 3x higher than someone without epilepsy.

75% of people with epilepsy living in low-income countries do not get the treatment they need. Not only can medium and low income countries not afford treatement, they cannont invest in epilepsy research.

This puts the responsibility on countries like Canada to step up and find a cure, not only for the 370,000 Canadians, but for the estimated 50 million people worldwide living with epilepsy.