'People stare when my seven-year-old son has seizures in public'

For mum Rebecca, it is an unusual day when her seven-year-old son Tyler goes without a seizure.

She rarely leaves her Birmingham home when he is at school in case the call comes - a seizure can happen at any time, day or night.

That is because Tyler has Lennox-Gastaut syndrome, a rare and severe condition that affects only 1-2% of children with epilepsy.

It is something Rebecca wants to raise awareness of, while challenging public reactions - especially when it comes to staring when Tyler has a seizure in public.

"I want people to look at Tyler and know his name and know his story," the 34-year-old told the BBC. "When he's having a seizure people tend to look and stare and that can be a bit difficult."

According to NHS England, Lennox-Gastaut syndrome is a rare, lifelong, treatment-resistant form of epilepsy that causes frequent, unpredictable and debilitating seizures.

The charity Epilepsy Action said most people with the condition would need support and care throughout their lives.

Tyler, who is autistic and non-verbal, is at high risk of sudden unexpected death in epilepsy. He has tried multiple medications but is drug-resistant.

Despite this, he attends The Bridge school in Sutton Coldfield almost every day, which Rebecca describes as "fantastic".

Tyler has now received an Epilepsy Star award from Epilepsy Action, recognising his bravery, with chief executive Rebekah Smith praising his "strength and resilience at such a young age".

While Tyler does not understand what is happening, that bravery is in the face of plenty of frightening moments, a seizure can come even when he is alone with his mum in the car.

"The car ones are the worst because I'm trying to perform an emergency stop and get to him so he can breathe," Rebecca said.

While the condition is rare, Tyler is not alone. About 60,000 children in England live with epilepsy, with 1-2% affected by Lennox-Gastaut syndrome.

In February 2025, the NHS began rolling out a new treatment, fenfluramine, for children with the syndrome - the first non-cannabis based treatment approved for use.

NHS England's national medical director Stephen Powis said it would offer "new hope" to families facing "unpredictable and life-limiting seizures".

For Rebecca and her family, that unpredictability is a daily reality. But she feels lucky Tyler is still able to do the things he enjoys, like going to school and playing on his trampoline.

"Some days are harder than others but we are just so happy he is here," she said. "That's all we can ask for."

Follow BBC Birmingham on BBC Sounds, Facebook, X and Instagram.