Sharing Matthew’s Epilepsy Journey

My journey with epilepsy began in May of 2020. My son, Matthew, who was three years old at the time, was diagnosed with epilepsy at the height of the COVID-19 pandemic. Ironically, my husband and I have the pandemic to thank, as it alerted us of Matthew's seizures. His first presentation of seizures were quick eye-flutters that could have easily been missed if not home, together with the closure of daycare and our workplace office. 

With the help of our pediatric neurologist, we learned that Matthew's epilepsy is linked to the rare CHD2 gene. At the time, minimal research or information was available, but fast forward to today, much has been learned and continues to be researched. With this genetic component, unfortunately, Matthew's seizures are complicated to control, and he experiences seizures daily. We have started to see focal awareness seizures as well this year, which is concerning, but we are powering through. Throughout this journey, Matthew has shown such resiliency and bravery. He is still our funny, vibrant, intelligent boy who has learned to take on challenges with humor and strength at such a young age. We are proud of him and grateful for the Epilepsy Foundation and community. 

As a parent to a child with epilepsy, I was and continue to be scared beyond words. As parents, we want to protect our children and be able to control their health and well-being. With epilepsy, I have limited control as it's not up to me or my husband. We had to learn that all we can do is the best we can by ensuring we stick to our medication schedule and doctor visits, continue to educate ourselves, do what is best for our family despite what other people may think, and lean on our support system of family and friends. Also, we had to learn to give ourselves some grace. Epilepsy is complex, with so much unknown, so we have to go easy on ourselves.

I wanted to share our family's story because it may help someone else, perhaps another parent to a child with epilepsy, not feel alone. Also, sharing my son's story helps me feel like I can take something difficult and flip it to something positive through actions and involvement in the epilepsy community. Embrace the hard days, but don't get stuck there. There will also be many great days to look forward to and ensure you celebrate even the smallest wins. We are in this together!