Epilepsy

Hear Her Voice: Reflections from me A couple of weeks ago I attended Hear Her Voice, an event hosted by Young Epilepsy for International Women’s Day. It brought together mothers, daughters, clinicians and young people to shine a light on what it truly means to live with epilepsy. For me, it hit differently. As our followers know, I’m a mum to a five-year-old with epilepsy, cerebral palsy and autism. Her seizures are uncontrolled — we typically track between 11 and 15 each wee

The problem nobody talks about: parents are expected to remember everything. If you are raising a child with additional needs, you already know this feeling. You walk into an appointment and someone asks: How has sleep been? How many seizures? How often are meltdowns happening? Is school affecting behaviour? Is medication helping? And you want to answer properly, because your child’s care depends on it. But your head is full. You are tired. You are juggling work, siblings, sc

A weekend of reflection, and a wake-up call. This weekend has felt like a time for reflection and, in many ways, a wake-up call. I have reached a milestone birthday, and although it has been a lovely celebration with my children, it naturally makes you stop and look at your life more closely. It makes you think about what matters, what needs to change, and what simply cannot be ignored any longer. On Friday, after Lucy attended the Hear Her Voice event in London with Young Ep

The Children’s Wellbeing and Schools Bill has been presented as a major reform to improve safeguarding, strengthen attendance, and enhance support for vulnerable pupils. However, for families of children with complex additional needs — including those with Education, Health and Care (EHC) plans, disabilities, chronic illnesses, or mental-health challenges — the Bill introduces provisions that could create significant new risks, barriers, and unintended harm. Based on a detail

What it looks like before you have a diagnosis, and why trusting your instincts matters. Before we had words for it We finally met with Penelope’s neurologist last week. Our pre-Christmas appointment had been cancelled due to sickness and rescheduled for January. Even the snow tried to stop us attending, but we insisted on a face-to-face appointment. It felt important — not just clinically, but personally — to meet the doctor who would be responsible for our daughter’s care.

How Sleep Impacts Seizures and Behaviour in Children with Additional Needs Sleep isn’t just a time for rest — it’s one of the most critical parts of brain regulation. For children with epilepsy, autism, or cerebral palsy , poor or disrupted sleep can affect more than tiredness. It can alter emotional control, increase seizure activity, and impact daily behaviour. At My Penelope , our Sleep Tracker  was designed to help parents understand these invisible patterns — to turn wor

Why We Created the Sleep Tracker Sleep can make or break a day — especially for families navigating epilepsy, autism, or other additional needs. When Penelope’s seizures and fatigue worsened, we realised that sleep wasn’t just part of her routine — it was part of the pattern. We were jotting down times, guessing at totals, and trying to explain to doctors how many times she’d woken up. It was impossible to keep consistent. That’s why we built the Sleep Tracker  — to make reco

Why We Created the Seizure Tracker Like many parents, we started by scribbling seizure notes in the margins of notebooks, on our phones, and anywhere we could find in the moment. When our daughter Penelope’s seizures began, we wanted to capture every detail — but keeping track of them manually quickly became overwhelming. The Seizure Tracker  was one of the first features we ever built into MyPenelope . It had to be intuitive , fast , and usable even during high-stress moment

When Words Don’t Come Easily I’ve wanted to write this for a long time. But as any parent knows, finding the time  and more importantly, the mental space  to unpack everything life throws at you can feel impossible. And as a man, writing about emotions — about fear, helplessness, love, and guilt — doesn’t come naturally. We're not raised to talk about what’s going on inside. We’re raised to handle it . To fix things, hold it together, and not let anyone see the cracks. But wh

Calm, practical steps for parents when a child has a seizure — and what to record afterward to help clinicians. Emergency advice included.

Signs of epilepsy in children, the diagnostic pathway, and practical first steps for parents — how to log seizures and work with clinicians.