Before Everything Changed
Leo had lived with epilepsy since he was three, but epilepsy did not define him.
Then came 2020.
When COVID-19 forced children out of school and into an unstructured world of home-schooling, Leo struggled. Although he was recognised as a vulnerable child in need of support, that support never came. There was no check-in, no meaningful plan and no real understanding of what was happening to him.
In June 2020, Leo suffered his first cluster of tonic-clonic seizures — eight seizures in 24 hours. He was admitted to hospital, where his medical team stressed how important routine and a return to school would be.
Instead, his school excluded him because they were afraid of another medical episode. There was no effective process to challenge the decision. No one stepped in to help us navigate it. And from there, everything began to change.
Falling Through The Cracks
As Leo’s epilepsy worsened, so did the complexity of trying to care for him. Medication after medication brought new side effects. Hospitals struggled to communicate. Appointments were cancelled, concerns went unanswered, and important treatment decisions were being made during short appointments, with doctors relying on us to piece together what had happened since the last visit.
We were asked to keep a paper seizure diary.
We recorded everything - seizures, side effects, medication changes, hospital admissions and the changes we could see in our son. But there was no central picture of Leo’s health. No single place where his information could be brought together, understood and used to guide decisions.
Leo was eventually diagnosed with drug-resistant epilepsy.
His seizures became more frequent and severe. At his worst, he experienced 52 tonic-clonic seizures in a single month. He needed emergency medication regularly and, at times, two adults supporting him around the clock.
Our bright, happy, bubbly little boy was changing before our eyes.
We tried different treatment pathways, including VNS and a ketogenic diet, but we struggled to understand what was helping, what was making things worse, and how all the pieces connected.
We were exhausted. We were desperate. And increasingly, we felt completely alone.
The Risk We Didn't Know
In November 2022, when Leo was just turning 10, we were told that we had exhausted the available treatment options. We were told we had to live with his condition and manage it at home as best we could.
We accepted that we would probably be caring for Leo for the rest of his life.
But we never, ever expected that he could die.
We had never been warned about SUDEP - Sudden Unexpected Death in Epilepsy. Looking back now, we know Leo had been living with significant risk for some time.
On 14 December 2023, just two weeks after his 11th birthday, Leo had a seizure and died suddenly and unexpectedly.
There are no words that adequately describe losing a child.
Alongside the unimaginable grief came questions: Why had we not been warned about SUDEP? Why was so much of Leo’s health information sitting in diaries, emails and disconnected hospital records? Why were we, as his family, having to join the dots ourselves?
We had tried so hard to advocate for our son.
And yet, somehow, the system still lost sight of him.
From Leo's Story to Leo's Angels
I cannot bring my boy back. I cannot change what happened to him or to our family.
But I can choose what I do with what we have learned.
Leo’s story showed us what can happen when information is fragmented, communication breaks down and families are left trying to navigate a complex system without the tools or support they need.
His story is not unique. And we believe there is a better way.
That is why Leo’s Angels was created.
We want to turn our experience into action — bringing people, information, technology and care closer together to create a more connected approach to epilepsy.
This is Leo’s legacy. And this is where his story becomes a mission.