"I was 15 years old when my family and friends started noticing that I wasn't responding to them or that things around me seemed out of place, but I didn’t realize anything was wrong until later. Around May 2023, my family noticed that I wasn’t responding to questions or seemed out of focus at random times. It was happening about once a month, but we didn’t think much of it. My parents figured it was probably just part of my ADHD or maybe me being silly, especially since it was happening when I was hanging out with my friends or siblings. It wasn’t until later that we realized these episodes were actually focal seizures.

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In September, things got worse. I had several focal seizures in just one week. That’s when my parents decided to take me to The Hospital for Sick Children and not wait to see a neurologist in two months. After an EEG and an MRI, we found out that I had a cerebral cavernous malformation (CCM) in my right parietal lobe. I remember being confused at first, since I had never heard of cavernous malformation. But then the doctors explained that it could be treated with medication or surgery. That made me feel a little better, knowing that there were options.

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I started taking Keppra, which was hard to manage since I often had to be reminded to take it on time. I also missed hockey quite a bit when my seizures weren't controlled yet, and I had to check in with my parents more often to make sure I was safe. That feeling of having to be extra careful all the time was frustrating. I just wanted to be a “regular” teenager.

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A big challenge for me was being admitted to the Epilepsy Monitoring Unit (EMU) for three nights. I absolutely hated the experience—from the leads on my head and being sleep deprived to being confined to my room with no privacy. On the last day, I had two back-to-back tonic-clonic seizures for the first time, which was terrifying for my mom to witness. It took a few days for me to feel back to normal again after that. Despite these challenges, I focused on the positive, hoping that surgery could take away my seizures and the need for medication. My mom was anxious every day; she didn’t know much about epilepsy and nothing about cavernous malformations (since it is so rare), so she spent a lot of time researching online. I was really thankful that my mom found Cavernous Malformation Canada. The support from their community and especially their President, Prem Kaur, really helped us get through it all.

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We consulted with a couple of neurosurgeons in the U.S. for second opinions, and they both felt confident that the surgery would be successful given that my CCM was in a relatively safe spot and close to the surface. We also met with Dr. Quon at SickKids, and she gave us the option to either have the surgery or just watch and wait. I didn’t want to wait. I wanted the surgery to give me the best chance of living without seizures, worrying about what may come next, and needing medication.

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The surgery went even better than we expected. Dr. Quon was able to remove the entire CCM and the hemosiderin ring. I had a bad headache the day after coming home from the hospital, but after that, my recovery was smooth. I only needed Tylenol at home, and I was back to school just a week later.

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Now, I’m doing great! I made the honor roll at school, and I’m back to doing everything I love. My recent MRI looks good, and I have an EEG next month to see if I can start weaning off Keppra. I’m hopeful that my seizures won’t come back, especially since I haven’t had any since the surgery—not even when I get sick, which used to trigger them.

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One thing that was a bit frustrating was having to wait for the Ministry of Transportation to confirm that I’d been seizure-free for six months before I could get my G1 license. But now I’ve gone through driving school and can’t wait to get fully licensed by the spring. I’m also hopeful that by the time I leave for university, I won’t have to worry about taking Keppra anymore. It’s a big goal of mine to move forward without medication, and I’m feeling positive about the future.

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If I could share with physicians what it is like to live with CCM, I would tell them that living with a cavernous malformation is challenging, not just physically, but emotionally too. The seizures and medication are hard to manage, but the uncertainty of what might happen next is just as difficult. I think more awareness is needed about CCMs because before my diagnosis, I had never heard of them since it is so rare. Even after I was diagnosed, it felt like there wasn’t enough information easily available. It’s important for doctors to help patients and their families understand what a CCM is and to make sure they know all the treatment options, like surgery or medication. The emotional impact on families is huge, and having more support and information from the start can make a big difference. Increasing awareness will help more people get diagnosed earlier and feel less alone in the process.

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I’m so thankful for the great team of doctors and the Cavernous Malformation Canada community who’ve supported me and my family throughout this journey."