About Me – Adrian’s Story

When I was 9 years old, I started having what my family called “zone outs.” It looked like I was just staring into space for a few seconds, but they were actually seizures. I didn’t think much of them at first, but during the COVID lockdown my mom began noticing them more often. None of us knew it yet, but my life was about to change completely.

After several hospital visits, tests, and a lot of persistence from my mom, I was diagnosed with epilepsy caused by a benign brain tumor called a Dysembryoplastic Neuroepithelial Tumor (DNET). DNETs are rare, slow-growing Grade I tumors that often cause drug-resistant epilepsy—especially in kids and young adults.

We’ll talk more about DNETs and other brain tumors elsewhere on this website, but right now, this part is about me, Adrian—not the tumor.

My journey started with daily seizures—sometimes up to 30 a day. The medications I was given were strong, and although they helped a bit, they made me feel awful. When the doctors told me their goal was zero seizures, they explained that I needed a procedure… which was really a way of saying brain surgery - AWAKE.

I’m proud to say I stayed awake for two and a half hours during my surgery, answering questions the whole time. My surgeon told me it was a record—the longest any kid before me had managed was about 45 minutes. Even still, the huge scar bothered me for a long time. Recovery wasn’t easy, but it was fast: I was home in three days, back at school in a month, and playing ice hockey again three months later. My parents were terrified—but I just wanted to feel like a normal kid again.

But the truth is, I didn’t feel normal. For a long time, I felt sad, alone, and like I didn’t fit in anywhere. Those were some of the hardest years of my life. But I also know now that things could have been much worse, and because of that, I try to focus on my wins—big and small.

And that’s why The Grey Matter means so much to me. I don’t want any other kid with a diagnosis like mine to feel the way I did. No one should go through this alone.

Even while going through a 70-week chemotherapy treatment, I’ve kept moving forward. I earned my Bronze Cross, started working on my certification, have my blue belt in karate and am close to my brown belt, I ski, and I’m still on track to graduate high school with my class in 2028.

I’m not going to pretend this journey has been easy—or that I enjoy sitting in an MRI machine every three months—but I’ve learned to look for the silver linings. There are more than you think.

Thank you for taking the time to read my story. I hope it reminds you that even when things are tough—for you or for someone you love—there is always strength, hope, and community to lean on. And I hope you’ll think of me, and kids like me, as you continue your own journey.