Walking 3 Miles a Day in June for Epilepsy Society – Oscar's Story

In April 2023, while on holiday, we noticed something unusual about Oscar. He was just 5 years old. At random moments, he would suddenly become vacant, his eyes would roll upwards, and his eyelids would flutter rapidly.

Over the following weeks, these episodes became more frequent and more concerning. We also began noticing involuntary movements of his jaw and hands. The episodes could happen anywhere and at any time — while climbing a slide, crossing a road, riding his bike, or even taking part in his class assembly at school.

The wait for a referral felt like a lifetime. During that time, Oscar was experiencing up to 100 episodes every day. His learning was affected, particularly his reading, and much of the independence he had gained as a young child was suddenly taken away.

A few months later, Oscar underwent an EEG, a test designed to monitor brain activity and, in his case, attempt to trigger a seizure. For an hour, specialists used a variety of methods to provoke these episodes while Andy and I sat and watched. It was one of the most upsetting hours of our lives.

Oscar was exhausted and wanted to stop, but he carried on bravely until the end.

Following the test, we received the official diagnosis: absence seizures, also known as petit mal seizures.

Oscar was immediately started on medication, and over the last three years his treatment has been increased to help keep the seizures under control. Despite this, he still experiences breakthrough seizures and suffers side effects from the medication, including stomach pain, nausea, and concerns about potential new seizure types.

However, after speaking with other families affected by epilepsy, we are acutely aware of how fortunate we are. There is a possibility that Oscar may grow out of his epilepsy, and thankfully, he has not experienced a convulsive seizure.

One thing this journey has taught us is how many questions still remain unanswered. Our consultants have been incredible, but the reality is that there is still so much that isn't fully understood about epilepsy. More research is desperately needed.

That is why this challenge is so important to us.

Throughout June, we will be walking 3 miles every day to raise money for the Epilepsy Society and help fund vital research, support, and awareness for everyone affected by epilepsy.

Thank you to everyone who has donated so far. Your support means more than you know.

And thank you for taking the time to read Oscar's story.