Giving children with epilepsy a voice

Published: March 26 2019
Last updated: September 28 2022

What does epilepsy mean to you? How does it affect you? How do seizures feel? It can be hard to find the words to describe the wide-ranging impact epilepsy can have on someone’s life.

For young children, it can be even harder. We know how scary and overwhelming it can be for a child to be diagnosed with epilepsy at a young age. It can also be very difficult to make sense of what is happening to them. This Purple Day, 9 fantastic children took part in a special video to talk about epilepsy in their own words. Chantal Spittles, of Epilepsy Action, gives a behind-the-scenes account from the day’s shoot.

“Working in the press team at Epilepsy Action, we come across many moving and inspirational stories about children with epilepsy. We hear about the ways it impacts them – from their education and family life to their confidence and self-esteem. We also hear how it affects their parents – the panic and confusion they face when their child is diagnosed and the feeling that they’re the only ones going through it. To help address this, we set about creating a video for Purple Day to kick-start conversations around children’s epilepsy and help families to realise they’re not alone.

There was excitement in the air as the 9 children and their families gathered in the studio green room to prepare for the day’s filming. Having travelled from all over the UK, this was the first time they had met. But any nerves and shyness soon disappeared as they all realised they had something in common – epilepsy. Whether they have it themselves, or have a sibling or friend affected by the condition, they understand what it’s like to live with epilepsy.

Group by group, they took to the sofa to talk about all aspects of their condition – from how it feels to have a seizure and taking medication, to how their friends support them at school. Their responses were often humorous and light-hearted – two boys William and Alfie described their epilepsy medicine as tasting like ‘rotten bananas’ and ‘old socks’!

But there was a serious message coming through their conversations too – that epilepsy can have a considerable impact on children’s lives. Even in the green room, there were clearly friendships being formed among the parents as they shared support, advice and experiences about having children with epilepsy.

Rachael King’s three children Jenson, William and Darcie all have epilepsy. She said taking part in the video was a “brilliant” experience and that she was incredibly proud of them all for speaking out.

“They made friends on set with the most wonderful children who also have epilepsy. I felt they all had a connection and understood each other as they share such a similar journey. My husband Ben and I got talking to the parents of the other children who were being filmed – this was a great opportunity to share our stories and advice with each other. We had the most fantastic experience while raising awareness about epilepsy. We have also been blessed with making new friends, and we can all support each other on the journey ahead.

“I think it’s really important for the children to talk about their epilepsy –to raise awareness of the condition and what to do if they have a seizure. But it’s also important so they can share their experiences in a positive way and be proud of how strong they are. I don’t want their epilepsy to ever hold them back through childhood or anything they want to do in life. By sharing their journey from an early age it will hopefully make more people aware of the condition and get support from friends – putting an end to any misconceptions and prejudice about the condition.”

After the video director announced it was a wrap, the children gathered in the studio for one final group shot before heading off to the station to get their train home. It was a day I will never forget and it was a privilege to work with such a brilliant group of children and their families.