Stephanie Ruthven

Zeke’s Story

On 13 July 2025, when Zeke was just six years old, my life changed in a way I never could have imagined.

I had only recently put him to bed and he had just fallen asleep when I heard a strange gurgling sound. It sounded like he was choking. I rushed in to check on him and found him staring into nothing, unable to respond, with his lips turning blue.

I was terrified. I genuinely thought I was going to lose my son.

At the time, I didn’t even know what I was looking at. I had never experienced anything like this before. It wasn’t until the doctors told me they thought it had been a seizure that I began to understand what had happened.

At first, I convinced myself it was just a one off. One of those horrible things that happens and then never happens again.

But it did happen again.

Zeke had two more seizures in August, followed by another on 14 September. That seizure led to him having a sleep-deprived EEG, and we began to realise that being overtired was a major trigger for his seizures.

That week, he went on to have around 15 seizures.

His seizures are all nocturnal, which means they happen while he is asleep. As a mum, that has changed everything. I haven’t slept properly since this began. Every night, I lie awake listening and checking, wondering if that sound I hear is him having a seizure.

Medication initially helped control the seizures, but it came with its own devastating challenges. Zeke was put on Keppra, and although it helped with the seizures, it changed him. He became angry and depressed and experienced a level of rage that I had never seen from my beautiful little boy before.

Watching your child change in front of you because of a medication that is supposed to help them is heartbreaking.

After reducing the Keppra, Zeke had another frightening period in December, with back-to-back seizures while we were already in hospital. That was when he was changed to Epilim.

Since then, he has had one seizure in January 2026, and thankfully his medication has helped us keep the seizures at bay.

But epilepsy doesn’t disappear just because the seizures are controlled.

I still check Zeke’s breathing multiple times every night. I still worry every time he goes to sleep. I still listen for every unusual sound.

Zeke can’t simply have a sleepover at his grandparents’ house like his sister does. He needs to sleep with me every night because I need to know that I’m there if something happens.

Before Zeke’s epilepsy, I don’t think I ever truly understood what epilepsy meant. I knew what a seizure was, but I never understood the magnitude of how much epilepsy could change a child’s life or the lives of everyone who loves them.

Epilepsy now affects my family in a very real way.

It is one of the scariest things I have ever been through, and I know that we are one of so many families living with that fear.

That’s why I’m walking for epilepsy.

I’m walking for Zeke. I’m walking for the families who lie awake listening to their children breathe. I’m walking for the children whose lives have been changed by seizures and medication. And I’m walking to help raise awareness of just how much epilepsy can affect a family.

Because epilepsy isn’t just the few minutes that a seizure lasts.

It’s the fear before it happens, the exhaustion afterwards, the constant worry, the medication, the hospital visits, the sleepless nights and the things your child can no longer do without extra thought and planning.

I’m walking because I want Zeke to grow up knowing that he isn’t defined by his epilepsy and because I want more people to understand what families like ours are living with every single day.