I am fascinated by the brain. I spent over 10 years teaching undergraduate Psychology and Neuroscience sharing my fascination. During most of that time, epilepsy was largely academic to me. It was something I talked about in classes and perhaps learned about in first-aid courses. I knew people who suffered from epilepsy, but it was controlled, and therefore, kind of invisible.
This all changed in 2013.
I received a sobbing phone call from one of my oldest friends, Leah. Her three-year-old daughter, Bronte, had experienced a cluster of seizures. Along with her husband, she had spent the past few days at the children’s hospital surrounded by machines pinging, with doctors throwing confusing medical terms around and with family reassuring them ad nauseam. All the while having the bewildering aftershock of seeing their tiny daughter having multiple tonic-clonic seizures.
Leah told me that she’d hit the jackpot.
Not because of the horrendous ordeal that her daughter was experiencing and that she and her husband were witnessing (that SUCKED more than any parenting experience to date). The jackpot, she said, was that she had me and my Pharmacologist husband at her disposal. Leah’s background is Dentistry and her husband is a Business Owner. At that time, they knew very little about neurology but now they needed to know and understand more. I felt underqualified as I was no expert on epilepsy! But I knew a little academic stuff, and I wanted to help them.
Over the following couple of weeks, Leah and I sat down for a Brains 101crash course. She asked questions, and I did my best to answer them. We talked about brains, their neurons and how they work. We talked about the neuroactivity of seizures and how epilepsy medications effect it. We talked about her feelings, hopes and fears for Bronte. Epilepsy was no longer academic for me!
Importantly, we talked about how best to explain to Bronte what was happening. She had a right to know – but how? We searched the web for resources but found nothing. That was when the “Cheeky Neuron” was born. With the help of a toy neuron, we explained to Bronte what was happening within her brain. She had Cheeky Neurons; they were getting too excited and chattering too much!
The return of the Cheeky Neurons
Fast forward four years; I commenced a Masters in Science Communications and chose to include a project which would connect my interests as well as make a difference in this world. As there was still very little family-targeted information available online regarding epilepsy, I chose to officially bring the Cheeky Neuron to the world. I knew what Leah had wanted to know. Epilepsy is emotional, confronting, frightening and very often for affected families, confusing.
Epilepsy is the oldest and most common neurological diagnosis in the world. Yet, it is surrounded by fear and stigma which often hinders open conversations and subsequently general awareness of the condition.
Nix & Nellie, the Cheeky Neurons, are the medium through which I am trying to educate and reduce the fear of epilepsy for families like Leah’s. The Cheeky Neurons website reflects the questions and the frustrations that Leah and her family experienced on their epilepsy journey. It presents easily accessible and easily understandable information for families upon diagnosis. For the children who are diagnosed, Nix, Nellie and their neural network take them on a journey explaining epilepsy using colourful and fun animations. The site also features interviews with experts and provides activities and links to support groups; all packaged in an entertaining, family style.
It’s been a steep learning curve for me. As I said, I’m still no expert on epilepsy. I’m also no expert on website design, animation, interviewing experts or any of the other MILLION skills I’ve needed to get a grip on to make this happen! It’s been frustrating and at times frightening, with occasional bouts of imposter syndrome. But it’s a journey and every time I look at how far the project has come within just a few short months, it’s been worth it! Every time an epilepsy advocate or organisation follows Nix & Nellie’s Twitter feed or shares their website, it’s worth it. Every time someone affected by epilepsy writes to me to thank me for Nix & Nellie, it’s worth it.
The future of the Cheeky Neurons
We need to face facts. Children are affected by neurological disorders like epilepsy, either as those with the diagnosis, those trying to support someone, or those who witness seizures. It’s not accurate to tell them that they, or their loved ones, are “sick”. Adults can sometimes perceive themselves as being “protective” when they withhold information/any explanation of epilepsy to a child. Indeed, sometimes the adults don’t initially understand the epilepsy themselves. But, children have a right to know what’s happening, and they also have an astonishing willingness and capacity to understand and learn information when it is pitched at their level. Knowledge is how we combat the stigma and fear that surrounds conditions like epilepsy. Knowledge is power.
In the long term, perhaps Nix & Nellie will take journeys to explore other neurological issues. Maybe Huntington’s disease, Multiple Sclerosis, Dementia or Motor Neuron disease; the list is huge. If Nix & Nellie can help families understand epilepsy, or some other topic that they explore in the future then the journey is worth it, for all of us.