Remembering My Brother Joe

My name is Lily, and I’m 17 years old. Most people who know me aside from family only know me as having one younger brother. But that wasn’t always the case. In December of 2025, I lost my older brother Joe to Sudden Unexpected Death in Epilepsy (SUDEP). He was 29 years old. Joe was my favorite person and my entire world. He was not only my big brother, but my father figure and a person I truly looked up to. He was always happy, always smiling, and the sweetest person in the entire world. There simply aren’t words to describe him unless you knew him yourself. 

Joe left a mark on everyone’s lives, especially my own, and he made friends everywhere he went. He was the kindest, sweetest, most caring person I’ve ever met, despite his own personal health struggles. Joe was diagnosed with epilepsy in his senior year of high school after having a non-cancerous brain tumor removed in childhood. He lived with epilepsy for around ten years before his passing. Joe managed his epilepsy diligently with medication, his diet, and exercise, but always allowed himself to have fun on the side. He truly did not let his epilepsy affect him one bit, despite his struggles with it. He lived every day as he should - happy, smiling, and experiencing new things. He loved hiking, outdoors, sports, the Colorado mountains, music, but most of all, his friends and family. He was truly one in a billion, an angel on earth. 

Never in my life did I imagine I would lose my brother to SUDEP. I miss him more than anything in this entire world. But despite this, I decided to share his story in hopes it will help comfort others, especially siblings of people who have also passed due to SUDEP. To those who have also lost a sibling to SUDEP, you are not and will never be alone. And, although I deeply wish my brother were still here with us, I feel it’s incredibly important to share his story and how he dealt with his epilepsy and never let epilepsy bring him down, despite how challenging it was for him at times. Ultimately, to me, the most inspiring part of my brother’s story is how he remained happy and always looked on the bright side, no matter what his health struggles.

Even though I do not have epilepsy myself and will never understand just how mentally and physically taxing it is, my brother is an inspiration to me every single day to keep fighting and keep going despite our personal struggles. I live every day in honor of my brother. In honor of his legacy, his life, and his love, I keep going. I hope that if this reaches anyone, it will inspire them to keep going as well, regardless of whether you yourself struggle with epilepsy or have also lost a loved one due to epilepsy.

Every day is a gift; cherish it, and don’t stop fighting for your health and well-being. Keep going. In honor of my brother and as he always told me, go outside, go for a run, feel the sun on your face, and know everything will be okay despite how it feels in the moment. Know that people love you and care for you, and that I am rooting for you, especially if you have epilepsy or are a loved one of a person with epilepsy.