When Eddie was just seven months old, he was diagnosed with infantile spasms, a rare seizure disorder which is also known as West syndrome. More than ten years later, he is still living with drug-resistant epilepsy, the current diagnosis is for ‘emerging Lennox Gestaut Syndrome.’
His mum, Ilmarie, shares the reality of raising a child whose seizures have never been controlled, why cannabis-based medicine has helped, and the fight many families face simply to access treatment.
“People think epilepsy is just one type of seizure. They have no idea.”
When Ilmarie was expecting her second child, Eddie, the whole family was looking forward to his arrival. Their older son, Thomas, was especially excited and couldn't wait to become a big brother.
At 35 weeks pregnant, everything changed.
During a routine scan, doctors discovered severe damage to Eddie’s brain. One minute the family were preparing for a new arrival. The next, they were being told their baby might not survive.
“When they told us about the brain damage, they couldn’t really tell us anything. He might be totally fine or he might not survive. We just didn’t know.”
Eddie was born by planned caesarean section and, at first, seemed to be doing everything a newborn should do. But within months, concerns started to grow. He was diagnosed with cortical visual impairment and hemiplegia. Then, at seven months old, Ilmarie noticed movements that she feared were seizures.
She was right.
An emergency EEG confirmed Eddie had infantile spasms, a rare and severe epilepsy syndrome.
“I think for us that really changed the trajectory of everything.”
Living with seizures every day
Many people imagine epilepsy as an occasional seizure followed by long periods of normal life.
That has never been Eddie’s experience.
Despite trying multiple medications, dietary therapies and specialist treatments, his seizures have never been fully controlled. He continues to experience several seizure types, including epileptic spasms, focal seizures and tonic-clonic seizures.
Today, at 11 years old, Eddie is living with cerebral palsy, a profound learning disability, visual impairment and epilepsy.
Every morning starts the same way.
“When he first wakes up, he still has clusters of epileptic spasms. We open his blinds and allow him time to gradually adjust to the light, because he has photosensitive epilepsy, and self-triggers seizures using the change in ambient light. We've never been able to stop those.”
Some days he may experience around 100 seizures. On other days, that figure can be closer to 300.
His epilepsy care plan travels everywhere with him. So do his rescue medicines.
“The epilepsy is terrifying. We worry about SUDEP. We worry about all of those things.”
Multiple treatments couldn’t stop the seizures
Like many affected by drug-resistant epilepsy, Eddie’s family spent years moving from one treatment to another, hoping something would finally stop the seizures.
The first combination of frontline treatments did not work. Neither did a series of anti-seizure medicines that followed.
The family also tried the ketogenic diet, which dramatically changed Eddie's childhood. While other toddlers were eating birthday cake, Eddie spent years on a highly restricted diet in the hope it might reduce his seizures. However, despite committing to the diet for an extended period as part of a clinical trial, it did not bring significant seizure control.
“He didn’t really try cake until he was nearly four.”
The seizures continued.
What many people do not see are the side effects that often come with epilepsy treatments.
During one period on steroids and medication, Eddie slept for up to 18 hours a day. When he was awake, he was often seizing.
“The photos from that time make me really sad because he was just lying there.”
Trying cannabis-based medicine
When Ilmarie first heard about cannabis-based medicines for epilepsy, she dismissed the idea immediately.
“I remember being really upset and thinking, ‘I’m not going to give my baby cannabis.’”
But after years of failed treatments, the family started researching it more closely.
What they found were other families seeing results where conventional medicines had not succeeded.
Eventually, Eddie started taking a type of CBD (cannabidiol) that had been specifically formulated for epilepsy, they imported it from abroad and his NHS consultant agreed to monitor the impact alongside his existing care.
The results were impossible to ignore.
“Eddie did start to improve and the seizures did start to go down.”
Later, he was able to access a prescription for a full spectrum cannabis-based medicine with THC through a private doctor. For a period, he was taking only cannabis-based medication and his seizures remained stable.
For Ilmarie, the impact was clear.
“It helped more than anything else had helped and had the least side effects.”
But she is careful to challenge a common misconception.
Cannabis-based medicine did not cure Eddie’s epilepsy.
It did not make him seizure-free.
Nor did it remove the daily realities of living with a complex, drug-resistant epilepsy.
“We're one of the lucky families that have a private prescription. It's helped the most of everything, but that doesn't mean he's seizure free because he's not.”
The fight for access
While cannabis-based medicines were legalised in 2018, access remains extremely limited.
Like many families, Ilmarie spent years campaigning for change. The family attended demonstrations, spoke to politicians, met decision-makers and repeatedly pushed for NHS-funded access.
Years later, Eddie still receives his prescription privately, funded by the family
“Nothing is really changing and there’s still no NHS access.”
The family are grateful that Eddie has access to treatment, but Ilmarie worries about those who do not.
Eddie is not his diagnosis
For all the medical appointments, therapies and seizures, Ilmarie wants people to remember one thing.
Eddie is first and foremost a little boy.
He's really loving. He's really cheeky. He is wild.
He loves rough-and-tumble play with his dad and older brother. He communicates in his own way. And every new skill, no matter how small, feels enormous.
A few years ago, Eddie learned how to pull people towards him when he wanted a cuddle.
“That was the most beautiful thing because it was the first time he was able to say, I need you. Come closer."
Why these stories matter
Ilmarie believes there is still a huge gap between what people think epilepsy looks like and the reality many families live with every day.
“The reality for children where the epilepsy is never controlled, we don't think about that.”
For some children, epilepsy is not a condition that can simply be managed by taking medication and avoiding triggers.
It can mean hundreds of seizures, emergency medication, hospital stays, sleep deprivation and around-the-clock care. It can affect the whole family.
Yet Eddie’s story is not just about epilepsy.
It is about persistence, love and finding joy in the middle of uncertainty.
“He is a joy and he's fun and he's silly and he's loving.”
How you can help
Thousands of children and young people in the UK are living with epilepsy. For many, seizures cannot be fully controlled by medication. Your support helps Young Epilepsy provide information, support and a voice for children and families facing the realities of epilepsy every day.
Find out more about about childhood epilepsy research:
Childhood Epilepsy Research | Young Epilepsy
Find out more about cannabis-based anti-seizure medicines:
