Our Journey with Epilepsy: Evie’s Story

I thought we would share our journey with epilepsy to give you an insight into why we started creating these books, and why raising awareness means so much to us as a family.

Our daughter Evie began having seizures when she was just four months old. After many tests, we discovered she had a rare brain migration disorder called Pachygyria — a condition that affects how the brain develops and can lead to severe developmental delays and epilepsy.

From that moment, our journey with epilepsy truly began.

Over the years, we tried countless medications — each one bringing either unbearable side effects or only short-lived seizure control. As parents, it was heartbreaking to watch Evie go through so much, always hoping that this new treatment might finally bring her some relief.

By the time Evie was five years old, her epilepsy was classed as Intractable / Drug-Resistant Epilepsy. Hearing those words was devastating. It meant that despite everything, her seizures were unlikely to ever be fully controlled by medication alone.

Then, in July 2020, an EEG revealed that Evie was also suffering from Electrical Status Epilepticus in Sleep (ESES) — a rare and complex form of non-convulsive status epilepticus. During sleep, her brain was in a constant state of electrical activity, making rest and recovery almost impossible.

We began to see our bright, bubbly little girl lose skills she’d worked so hard to gain. Her development regressed, and the babbling and early words she’d started forming suddenly stopped. Evie became completely non-verbal.

But in October 2020, our journey took a new turn. Evie underwent surgery to have a Vagus Nerve Stimulator (VNS) fitted — a small device that helps regulate electrical activity in the brain — and we also introduced CBD oil alongside it.

That combination has been truly life-changing.

For the first time in years, Evie’s seizures became more controlled. She still experiences breakthrough seizures occasionally, usually as she grows and her weight changes, but the difference has been incredible. Her nights are calmer, her body is stronger, and her spark has returned.

Over the past twelve months, we’ve seen the most heartwarming progress. Evie has started “chatting” again — her own little language, full of joy, sass, and laughter. She may still be non-verbal, but she communicates with her eyes, her expressions, and her whole personality. She’s now a happy, confident, and wonderfully sassy 11-year-old who brightens every room she enters.

Evie is the heart behind everything we do. She’s the reason we created Thunderstorm Inside My Head — a gentle story that helps children, families, and carers understand epilepsy through a child’s eyes. We wanted to turn something frightening into something that could be spoken about with empathy and understanding, and to help other families like ours feel less alone.

We’re now working on our second book, My Super Computer, and the Storms, which explores VNS therapy (Vagal Nerve Stimulation) in a child-friendly way — helping children understand how their “little computer” helps calm the storms before they begin.

This journey has taught us that even through the toughest times, there’s always hope, and always something beautiful that can grow from the storm.

💜 You are not alone in your storm. 💜

With love,Michelle & Jonathan Carr(Parents to Evie)

Authors & Illustrators of Thunderstorm Inside My Head