Hear Her Voice: Parenting a Child With Epilepsy & Complex Needs.

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 week, and those are only the ones we see. Like so many parents of medically complex children, our days are shaped by uncertainty, care planning, advocacy and hope.

In our case, because Penny’s seizures often don’t present in a textbook way, we live in this constant cycle of watching, logging, guessing, hoping, and bracing. Even when she’s smiling, you’re always wondering when the next one will come.

Walking into a room full of women and young girls who understood that reality was both grounding and overwhelming. The honesty in that space was powerful — and, at times, heart-breaking.

“We’re all just winging it.”

One of the first comments of the day from Holly Steer @autismandourworld summed up what every parent of a child with epilepsy knows deep down:

“We are all just winging it.”

There is no guidebook for navigating uncontrolled seizures in a child who already has multiple diagnoses. Every day you learn something new. Every day you adapt. Every day you find reserves you didn’t know you had.

And still, when seizures hit back‑to‑back or medication changes derail everything, you have to remind yourself:

“Tomorrow is a new day, and tomorrow we go again.”

That mantra from her is survival. It's ours too — especially on the days when Penny comes home exhausted from seizures nobody spotted and we have to somehow reset ourselves for the next morning.

When the system doesn’t keep pace

A major theme throughout the event — echoed by parents from all backgrounds — was that the system supporting children with epilepsy simply isn’t fit for purpose.

Education is struggling.

Elina, a film and television student at the London Screen Academy, recalled at school she was having up to 15 absence seizures a day, causing her to miss entire chunks of learning. Yet schools continue to rely on minimal training and inconsistent care plans.

A phrase repeated around the room was:

“Epilepsy training should be in all schools.”

It resonated deeply.

Although Penny’s school is incredibly supportive — and we are lucky — they still miss so much. They don’t see her absence seizures. They barely recognise her clonic‑tonic seizures because they don’t always manifest in the “traditional” way. So she gets through the day, but she comes home exhausted, confused, dysregulated — and then we repeat the cycle.

We’re also in the middle of our EHC plan battle. The LA have focussed almost entirely on her autism and failed at that too — but most worryingly, they have not included epilepsy at all. The condition that is the most serious… the one that could kill her… isn’t even mentioned in the current draft plan.

Healthcare lacks humanity.

We also heard stories that were heavy to absorb.

Mothers spoke of misdiagnoses, dismissive attitudes and devastating news delivered without compassion. Nicole Ronson Allalouf spoke about her journey and described a moment she will never forget:

“I’m so sorry. We’ve read the scan properly — your daughter has a brain tumour.”

Her daughter had been having hundreds of seizures a day.

There was talk of children being labelled “too mainstream” for help, or recalling outright comments from medical staff that their futures were limited before they had even begun.

And like so many families, we have felt that lack of humanity too. When Penny had her tonsils and adenoids removed, she couldn’t breathe because of her severe sleep apnoea. She refused the monitoring equipment, so the nursing staff told me they couldn’t help us — and left me alone all night with a distressed four‑year‑old in a hospital ward trying to keep her calm.

It was one of the worst nights of my life. I didn’t know then what I know now. A year later, I am stronger. More informed. And more determined.

As parents, we don’t expect perfection. But bedside manner matters — especially when the stakes are this high.

The medication journey: necessary but brutal

Another huge shared theme was the sheer emotional and physical toll of epilepsy medication.

Olivia Salvati, a trainee solicitor, described it with heart-breaking clarity:

“Trying medication felt like being a guinea pig at 12 years old.”

Every parent in the room nodded. I nodded.

Penny is now on her third medication type. We started with Keppra — and as the dose increased, she became someone else entirely. Then Briviact, which helped briefly before she became numb, disconnected, and lost her spark .Then Oxcarbazepine, which has left her almost “drunk,” slurring, talking out of one side of her mouth even more — and still no improvement in seizures. In fact, more tonic‑clonics.

All of this… for a five‑year‑old trying to enjoy her childhood.

The bold truth is that people see seizures — but not the side effects. Emma O’Brien, founder of @Leos_Angelz, described her son as:

“Drowned in a sea of side effects and drugs.”

That line will stay with me for a long time. Because that is how it feels. You can’t tell where the child ends and the medication begins.

Stigma still lives in the shadows

Latifa van Hein shared her story and one moment that captured the stigma young people face:

“They thought my drink had been spiked. If I’m not open about this, it’s going to be worse for others.”

That courage — to be open so others won’t be misunderstood — is exactly what this event was about.

Where My Penelope fits into all this

As all of these discussions unfolded, I found myself reflecting on exactly why we built

My Penelope in the first place — because families desperately need tools that bring everything together in one place.

The My Penelope app was created by parents like us to help capture the full picture of our children’s needs. It allows parents to track seizures, sleep, mobility, meltdowns, sensory triggers, emotional regulation and more — helping spot patterns, support referrals, and build a clear record for clinicians, schools and EHCP processes.

The seizure tracker goes even further — with one‑tap logging of type, duration, medication and recovery notes — helping identify patterns between seizures, sleep quality and fatigue.

Holistic tracking matters. It matters because schools miss things. Clinicians don’t see the day‑to‑day reality. EHCPs leave out life‑threatening conditions.

But when you track everything — behaviour, sleep, seizures, mobility, sensory overloads — you start to see the real child. The whole child. Not just the 10 minutes a professional observes.

Holistic tracking is one of the few ways I can genuinely help my child. It gives me evidence. It gives clinicians clarity, makes patterns visible. It makes the invisible parts of her condition impossible to ignore.

“You can’t do this journey without your army.”

Despite the difficult stories, there was also enormous strength in the room. Olivia said something I think everyone in that room understood:

“You can’t do this journey without your army.”

Whether that army is family, friends, charities, teachers who do get it, or other parents walking a similar road — community is everything.

And for us, that “army” now includes My Penelope too — a tool that genuinely lightens the load and helps us advocate with confidence.

Because raising a child with uncontrolled epilepsy is not something you do alone. And it shouldn’t be.

What I carried home with me

Leaving the event, I felt a strange mix of heaviness and hope. In honesty, I was exhausted.

Heaviness, because the system is stretched. Because so many families are fighting the same battles — in schools, in hospitals, in conversations where they should never have to justify their child’s needs.

Hope, because the voices in that room were strong. Honest. Brave. Determined.

Families like ours aren’t asking for the impossible.

We’re asking to be heard.

To be understood.

To be supported.

To not have to fight at every turn.

And most of all, we’re asking people to truly listen.

Because behind every seizure is a child.

Behind every child is a family.

And behind every family is a voice that deserves to be heard.

That’s why Hear Her Voice mattered. And why I’m still thinking about it weeks later.

Young Epilepsy

Young Epilepsy Supports children and young people living with epilepsy, offering guidance on diagnosis, education, safety and family support.

👉Visit Young Epilepsy

Epilepsy Action

Epilepsy Action Provides practical advice, emotional support and clear information for people affected by epilepsy, including parents at the very beginning of their journey.

👉Visit Epilepsy Action

Epilepsy Society

Epilepsy Society offers clear, reliable information for families living with epilepsy, alongside specialist services and research that pushes treatment forward. their resources around seizure types, triggers, medication and sleep can be especially helpful when you're trying to make sense of what's happening at home.

👉Visit Epilepsy society

You are not overreacting. You are your child’s voice.