Children’s book raises epilepsy awareness

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Children’s book raises epilepsy awareness

AMount Gambier youngster has co-authored a new children’s book about epilepsy which is set to paint the brain condition in a whole new light.

Ella And The Electric Paintbrush: A Positively Charged Epilepsy Tale tells the story of a fictional young Australian artist called Ella who lives with the brain condition epilepsy.

The character is based on Mount Gambier’s Ella Gray, who lives with a rare mix of epilepsies – and who is also an aspiring artist.

Ella, 13, authored the book alongside Scottish journalist and writer Fraser Morton, who also has epilepsy in his family.

Ella’s mum Katherine Cooper is over the moon that the book, which has some time in the making, has finally been published.

“This is a wonderful creative book that brings awareness to epilepsy and has also given Ella such an incredible sense of pride for the life she lives with,” she said.

“It’s both positive and inspiring. It’s so important to have more epilepsy stories out there in the world – and they do not all have to be doom and gloom.

“This story we hope can give kids who live with epilepsy a different story.”

Ms Cooper said Ella And The Electric Paintbrush was not just for children who live with epilepsy but also for readers 7+ who do not live with the brain condition and who are looking for an inspiring story with interesting characters and even some famous historical figures too.

“I was incredibly naive to epilepsy before Ella’s first seizure. It was not until I dove into research that I realised just how stigmatised epilepsy is and I knew then that I needed to use my voice to help create a change,” she said.

“Every day Ella experiences hundreds of seizures, with a seizure discharge occurring every 10-30 seconds. Ella has always shown resilience and courage far beyond her years and we live by our motto of celebrating, educating and advocating for epilepsy awareness.

“In the early years, I was always conscious not to let epilepsy define Ella or our life, but the reality is that it does. Epilepsy is the foundation of our world and while our life is different to that of our family and peers, different does not mean that it will not be any less wonderful.”

Young Ella hopes that her book will help people to understand what it means to live with epilepsy.

“I hope people realise epilepsy is not something to be scared of and that just because someone has epilepsy does not mean they should not be treated like everyone else,” she said.

“I cannot wait to share this book with my teachers and friends at school and help them understand some of the feelings I have.

“Ella And The Electric Paintbrush is my new favourite book. I keep re-reading it over and over again.”

Co-author Mr Morton said the book highlighted an important condition.

“People have many opinions about epilepsy and preconceived notions about what it is, but rarely do stories get out about what it means to kids and people who live with the condition,” he said.

“This story gives a new perspective.

“Ella is a very special young lady and highly creative. This book project has many positives, and I hope it shows other young people with epilepsy you can do great things, too. Look at Ella, she’s only just turned 13 years old and now she’s the author of her own book!”

Mr Morton said people had many opinions about epilepsy and preconceived notions about what it is, but rarely do stories get out about what it means to kids and people who live with the condition.

“Fiction allowed us the freedom to create a story that hopefully may capture the imagination of not only children who live with epilepsy, but their classmates, and other children too,” he said.

“If we want stories to circulate widely, we need to meet readers in new ways. Fiction helps open the subject to wider audiences and give more freedom to place epilepsy in wider narratives.”

The book idea was born after Ms Cooper and Mr Morton met at the Epilepsy World Congress in Bali in 2019, where she was attending the conference to receive a Golden Light Award for services to epilepsy.

“I was there making a documentary about epilepsy,” Mr Morton said.

“We soon became close and shortly after I flew to Australia, where I met little Ella and Katherine at the Brain Centre in Melbourne. Ella (then aged nine) was about to embark upon a new medicinal marijuana trial for an anti-epileptic treatment of drugs.

“We remained in touch throughout the pandemic, and in early 2022, during a particularly difficult time for Ella with her seizures, Katherine asked if we could work on a children’s book together and so Ella And The Electric Paintbrush is the result.

“It’s been a pleasure working on this project with Katherine and Ella.

“Ella has since become quite the little artist in real life and so in many ways, it’s been a case of art imitating life, or the other way around! Either way, it’s been humbling to see and I’m happy to be a witness to Ella’s journey into art and help in any way I can. Epilepsy needs more stories out there, and hopefully, people can engage with Ella And The Electric Paintbrush as something new and positive to learn about the condition.

“In terms of goals, if it means a few more kids having a little more understanding and compassion for epilepsy and what it means to people who live with the condition, then we have achieved our goal.”

The book is illustrated by Singaporean artist Sadiq Mansor, who also lives with epilepsy.

If the Ella And The Electric Paintbrush book launch is successful, the authors plan to bring out a series of fictional “Ella Adventure Books” that will explore a range of different issues surrounding epilepsy today.

Ella And The Electric Paintbrush is available now in e-book, paperback and hardback on Amazon.

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