If you would like to talk to someone about epilepsy, our trained advisers are here to help.
Oscar is 11 and getting ready to climb Ben Lomond on 20 August.
He is determined to reach the 3,200 ft summit to raise money and help people just like him.
“When I was 8, I had a series of strange episodes. No one knew what they were, but they felt really weird. Sometimes I would say I had other peoples’ dreams or memories in my head and I would feel really sick. I had more and more of these episodes but still the doctors weren’t sure of the cause. One morning, I woke up feeling really horrible. I couldn’t move but I knew where I was. My Mum found me and tried to talk to me, but I couldn’t answer. After that I had a tonic clonic seizure that lasted more than 20 minutes. I don’t remember it, but I know that an ambulance came and the paramedic was able to stop the seizure and take me to hospital. At first I didn’t know where I was or who anyone was, but I recovered and we had lots of tests. I ended up getting diagnosed with temporal lobe epilepsy when they caught a focal seizure on the EEG monitor. It turned out that all along the strange episodes I had were focal seizures. Now I take medication every day, and although I still sometimes have seizures, I haven’t had another tonic clonic and only really have seizures when I am very tired, unwell or stressed.
Lots of people don’t understand epilepsy at all, and when they do they expect everyone’s seizures to be the same: to look like a ‘fit’. It’s important to me that people understand that everyone’s seizures look and feel different. Also that epilepsy can affect me in other ways, like my emotions or my worries about becoming more independent in the future.
I wish people were not scared of epilepsy and knew how to help. Sometimes I get scared of being on my own in case I have a seizure. I can still do everything like everyone else, but I worry about doing things without supervision in case something happens. Recently I stayed overnight at Scouts camp and we built our own shelters. I also went away for three days with my school to PGL where we went abseiling, climbing and did archery. So I’m building my independence and confidence.
Dr Walker always believed me when I told her about my seizures and she listens to how I feel. I am part of all our decisions. My epilepsy nurse Mel is also great! She has trained staff in my school so they know how to help me. She is always there for us to ask questions.
Over lockdown I researched epilepsy and the charities that support people with epilepsy for a school project. I decided that I liked Epilepsy Action the best as the website and information were more suitable for children like me. It seemed positive about helping people live better lives, not focused on medical information that was scary or sad. I raised £1000 for Epilepsy Action by organising a Purple Day 1k which all my class took part in.
My next challenge is to climb up Ben Lomond. It would make me feel so proud to achieve it, like I can overcome anything. I’d love it if people sponsored me! I love fundraising for Epilepsy Action because it gives me a positive way of helping other people and to focus on instead of getting upset that I have epilepsy. I hope that some of that money will help people like me to be free of epilepsy in the future.
To anyone with epilepsy I would say this. I understand that you feel worried, but there are lots of children who have epilepsy and once you know about your epilepsy, people can help you in the right way. Keep talking about your feelings and find a way to fundraise if you can.
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