Penelope's story

Little Penny is five years old and has just started school. She has epilepsy, autism and cerebral palsy and is the inspiration behind a new free app ‘My Penelope’, designed by mum and dad, Lucy and Ashley, to help others cope with the daily challenges of epilepsy.

Ashley and Lucy are parents to three children, one of whom, Penelope, lives with epilepsy alongside other complex needs. They have built a free app called My Penelope, which is designed to help parents record seizures, sleep and day-to-day patterns in a simple, realistic way.  

They created the app, My Penelope based on their own lived experience, knowing how hard it can be to track and explain what life with epilepsy looks like between appointments. 

My Penelope

Lucy and Ashely created the My Penelope app because of Penny’s seizures and meltdowns.  At first, they tracked seizures, sleep and Penny’s moods in a notebook and then patterns started to emerge. They noticed poor sleep often led to seizures and changes in routine affected Penny’s mood and energy levels. 

In trying to understand their child, Lucy and Ashley had gathered evidence which showed what could trigger seizures, how medication was working and it gave valuable data to the clinicians and healthcare professionals supporting them. This is how they then conceived the idea of the My Penelope app to make life easier not just for themselves but also for other families with children with complex additional needs. 

Lucy said: “What began as our survival tool became something much bigger — a way to help others find patterns, peace, and power in understanding their child’s journey.

Every tracker, every note, every report in My Penelope exists because of what she has shown us: that knowledge is empowerment, and that when parents understand their child’s world, they can advocate for them with confidence and compassion.

We wanted a tool that helped parents record patterns over time, without medical jargon or unrealistic expectations. Something that could support conversations with clinicians, schools and services, and give parents back a small sense of control in a system that often feels stacked against them. The seizure tracker is the tool we use most. It has helped us communicate clearly with Penny’s neurology team, especially when decisions need to be made between appointments.”

Ashley said: “I know now that Penny doesn’t need me to fix her. She just needs me to see her, to believe in her, and to fight beside her. Yes, she has challenges — but she’s not defined by them. She’s bright, strong-willed, funny, and full of life. And I’ll keep saying it — there’s nothing wrong with her. Because in her own way, she’s shown me that strength doesn’t mean silence — it means showing up, every single day, even when the words don’t come.

Lucy commented: “I’d had epilepsy as a child, having seizures when I was around seven years old. I took Lamotrigine and it gave me bad anxiety and brain fog but controlled my seizures until I was taking my A-Levels. They continued until I went to university and eventually my seizures stopped. When I fell pregnant with our first daughter I was monitored in case my epilepsy returned but they didn’t do the same with Penny. 

Having lived with epilepsy, I was able to spot the signs and can tell when Penny is having an absence seizure but it took a long time for her to be formally diagnosed.”

Since starting school full time, her seizures have increased. More stimulation, more exhaustion, more seizures. Lucy said:” When we spoke with the neurologist he said it is all about balance. balancing the side-effects and balancing the need for medication and the desire to give Penny as ‘normal’ life as possible. If the medication doesn’t work, surgery will be our next option and that in itself is frightening. If we hadn’t been able to track and give all this data to our consultant, Penny would still be on the waiting list for surgery. But I trust we are in good hands and we have to make those difficult choices to give Penny the best shot she has. Surgery won’t stop her seizures but we are hoping it will halve them.” 

You can download the My Penelope app free of charge and it is available for Apple and Android phones: My Penelope App | My Site