My first seizure was on a run with my year six class at school. I remember stopping and feeling like I couldn’t draw my eyes away from this tree. It was really scary, but no one ever dreamed it could be a seizure. It wasn’t a one off though and these episodes began to become more and more common as the weeks went on.

In May 2011, my mum showed a neurologist a video of me having a seizure that she had taken on my phone. They were able to tell it was something neurological, so an MRI and EEG were carried out a week later. I was formally diagnosed with epilepsy in the summer of 2011, aged 11.

Personally, I just wanted it to just go away. I wanted answers about how to make it stop. I was willing to do anything and I felt ready to try any medication or undergo any surgery. 

My family probably had more complex feelings. I know my parents were both so relieved that the seizures weren’t being caused by a brain tumour or something more catastrophic. They were worried about what might be causing it and felt concerned about what having epilepsy might mean for me as a young person. 

Initially in primary school I didn’t talk about my diagnosis to friends. This was partly because when the seizures began, they were not obviously visible so I could hide them. I remember distinctly that I used to sprint across the playground when I knew one was coming and have them in private. Once they grew in severity and I no longer had warnings of when they might come on, I had to tell people about my condition. 

I was met with a range of reactions – in secondary school people definitely gossiped and some went as far as to call it attention seeking. It was difficult but it taught me a lot about who could support me and who couldn’t. 

School was difficult – both socially and academically. My learning was severely impaired and my grades slipped a lot after I began to have seizures. I had developed processing issues, making it especially difficult for my brain to grasp subjects like math and science.

The later in the day it was, the more seizures I typically had which also impacted my ability to take part in extracurricular activities. I wanted to be a normal kid so badly but it wasn’t always possible. 

How was your experience of being involved in Dr Antonio Valentin’s Institute-funded research?

Dr Valentin’s research focused on electrical cortical stimulation — a technique used to pinpoint the areas of the brain responsible for seizures. Being part of this project was truly life-changing.

Despite being one of the first patients on the trial, from the very beginning, me and my family felt we were in safe hands. 

Dr Valentin and Mr Selway, my brain surgeon prioritised my safety and my future every step of the way. Prior to taking part in the trial, I’d been given some bad odds. Multiple surgeons had advised me that I would more than likely end up paralysed on the right-hand side of my body. It was clear from the day we met Dr Selway that their team felt this was not a feasible option. From operating on me awake, to dedicating weeks of their time to my particular case, the entire team did their utmost to prove these odds wrong. I wouldn’t change taking part for the world. Despite the context of brain surgery, my family and I have such fond memories of Dr Antonio Valentin’s research to this day. 

Prior to this, I’d been given some bad odds. Multiple surgeons had advised me that due to the location of brain tissue that would need to be removed and the invasive nature of the surgery, there was a high likelihood I could be left paralysed on the right-hand side of my body.

Thanks to this research, I was able to undergo successful brain surgery, with minimal side effects. I had my last seizure the morning of the surgery and have since been seizure-free for 10 years.