Cardiff parents' desperate bid to save son, 8, from daily life-threatening epileptic seizures

Report contains some images that viewers may find upsetting

The family of an eight-year-old boy who began having up to 60 epileptic seizures a day are raising money in a desperate bid to get him potentially life-changing surgery in the US.

Caleb McCarthy, from Cardiff, started suffering with severe epilepsy just before his fourth birthday, which has greatly affected his development.

He has received hospital treatment in both Wales and England, but his parents said doctors eventually told them there was nothing more they could do for Caleb.

Kirsty said: "It affects his learning, it affects him socialising, his behaviour, relationships with friends, his brother, everything." Credit: ITV Wales

In a desperate search for answers, Kirsty Rosser and Stewart McCarthy sought help from a private epilepsy doctor in the US, who performed surgery on Caleb in 2022.

However the surgeon was unable to remove all of the affected area of Caleb's brain, and he soon began having daily seizures again.

"He had a wonderful six months afterwards. Caleb was going about 10 days without a seizure," his mother Kirsty said.

The family are now raising money for Caleb to undergo a second operation, which will cost £120,000. Credit: ITV Wales

"He was learning in between because his brain was able to recover, he was sleeping, and life just felt normal.

"It was wonderful, and we just thought if things stay like this that's it, we don't need to do anything more, but unfortunately he started to have a few more, well a lot more again."

The family are now raising money for Caleb to undergo a second operation, which will cost £120,000.

What is epilepsy?

  • Epilepsy is a condition affecting the brain causing repeated seizures

  • A one-off seizure does not always mean a person has epilepsy

  • People are usually only diagnosed with epilepsy if a doctor thinks there is a high chance they could have more seizures

  • Epilepsy can start at any age and there are many different types

  • Some types last for a limited time, but for many people, epilepsy can be a life-long condition

"It affects his learning, it affects him socialising, his behaviour, relationships with friends, his brother, everything," Kirsty said.

"At the moment he'll never be able to live independently.

Caleb's parents said doctors who had treated him in Wales and England told them there was nothing more they could do for him. Credit: Family Photo

Kirsty added: "There's the worry that as he gets older and he doesn't want me sleeping in his bed with him that I'm not there to monitor him all the time, there's the increased risk of sudden unexpected death in epilepsy (SUDEP).

"We've been told by doctors that he's at higher risk of that because he's uncontrolled and the majority of his seizures are in the night."

SUDEP can happen when someone has prolonged or consecutive seizures, or as a result of an accident or drowning, according to the charity Epilepsy Action.

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