Our Journey

Every year, Purple Day invites the epilepsy community to pause, reflect and reconnect. It is a chance to remind ourselves—and the world—that while epilepsy may shape parts of our lives, it does not define our potential. This year’s theme, “If I can, you can,” resonates deeply with me. Over the last year, as we’ve learned more about Penny’s epilepsy, her medication, and its impact on her daily life, I’ve found myself reflecting—really reflecting—on my own journey. A Childhood

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 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.

An honest start. It has been a couple of weeks since I last wrote a blog. There are a few reasons for that. We are working hard to get the My Penelope app out and released. We are in the middle of the Christmas period. There have been hospital appointments to juggle. Mostly though, I have been managing life and managing Penelope, and there has not been much space left for anything else. This blog is an honest view of Christmas and, heartbreakingly, how it is changing for us.

A Father’s Raw and Honest Reflection on Loving a Child With Cerebral Palsy, Epilepsy and Autism. When Family Life Begins to Break Under the Weight There’s a kind of exhaustion that lives deep in your bones when you’re raising a child with additional needs — the kind few people ever truly see. It’s not just tiredness. It’s emotional heaviness, fear, responsibility, guilt, hope, frustration, and heartbreak all layered on top of one another. If I’m honest, lately we haven’t felt

The Early Days: Lost in the Unknown When your child is first diagnosed with something life-changing, it feels like the world stops moving — and yet, somehow, you have to keep going. When Penelope was born, we had no idea the journey that lay ahead. We knew love — the kind that fills your lungs and makes you fight for every small milestone — but we didn’t yet know how much strength that love would demand. Those first few months after her diagnosis were filled with questions. E

When Attendance Becomes More Important Than Access On 12 November 2025 , the Education Secretary announced a new “Roadmap to Improve Attendance Levels” — a sweeping national plan to drive up school attendance and “restore absence to pre-pandemic levels.” On paper, it sounds positive: getting children re-engaged with education, providing breakfast clubs, mentoring, and data-driven support.But for families like ours — parents of children with special educational needs (SEN) —

Life Between Lockdowns: The Calm Before the Storm. After Penny was born, everything felt calm — eerily calm. She arrived between lockdowns, in a world where joy was muted and connections were made through screens. Friends and family met her over Zoom, and though it was strange, I secretly loved it. She was ours. The world outside was chaotic, but inside our little bubble, it was just us — cocooned, protected, learning this new rhythm of life. The Early Days: Endless Crying an

A Moment of Pride and Purpose Yesterday, I had the honour of speaking at the Women in Property Midlands event , hosted at Shakespeare Martineau in Birmingham. It was an incredible experience — not just as a professional, but as a parent and advocate. To stand in front of such a passionate and forward-thinking audience and talk about our journey with MyPenelope  and our amazing daughter, was something I’ll never forget. We spoke about the realities of parenting a child with ad

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

Penny's Birth Story When I think back to Penny's arrival, it’s impossible to separate her birth story from the strange, uncertain world...

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