The parents of an eight-year-old boy having so many seizures each day that doctors have said he is at high risk of sudden death have made a plea for help to prolong his life. Caleb McCarthy was a “perfectly normal little boy living a very normal life” until he began having seizures overnight on August 2, 2019, mum Kirsty Rosser recalled, speaking to WalesOnline from her family home in Canton, Cardiff, where she and partner Stewart McCarthy monitor their son’s every move to make sure he doesn’t suffocate during one of his fits.
“I was at work at my hair salon in Splott and my dad called me and said: ‘Come quickly, Caleb is having non-stop seizures and we’re in hospital.’ I raced to [University Hospital of Wales children’s ward] Noah’s Ark and we spent the next month there. It was a total shock. He’d never had a seizure before and hardly been ill. On that night he had 20 seizures and they’ve not stopped since.
“He had countless brain scans but they couldn’t find anything wrong and we got referred to Great Ormond Street Hospital where we stayed for months but they said it was too complex for them and there is nothing they could do either. They suggested he had a ketogenic diet, which didn’t help at all. The consultant there was very honest with us in saying if it continued then Caleb could be at high risk of sudden death from his teens. They sent us back to our local team at Noah’s Ark and we were just devastated.” For the latest Welsh news delivered to your inbox sign up to our newsletter.
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Stewart, a police officer with South Wales Police, said: “We were distraught. Caleb was seizing so often and so violently that he would sometimes turn blue because he couldn’t catch his breath. We asked if he would make it into his teenage years and were told the odds weren’t great.”
According to the Epilepsy Foundation sudden unexplained death in epilepsy (SUDEP) causes one in 1,000 deaths of people with epilepsy every year. It is the leading cause of death in people with uncontrolled seizures. Given the amount of uncontrolled seizures Caleb is having Kirsty said they’ve been told he is at a higher risk of SUDEP.
Determined not to give up on their son’s health Stewart emailed Dr Luke Tomycz, an expert in paediatric neurosurgery at Hackensack University Medical Centre in New Jersey, US, begging for support. “Dr Tomycz emailed us back pretty much straightaway and invited us to his clinic,” Kirsty recalled. “We dropped everything and went to the US in January last year.”
Dr Tomycz diagnosed Caleb with focal cortical dysplasia – a type of epilepsy in which seizures originate in the brain’s frontal lobe following an abnormality in the brain. According to medical experts it is the most common reason for drug-resistant epilepsy. Caleb remained in hospital in the US for three weeks while he underwent two operations to remove damaged brain tissue.
“He pinpointed an area of Caleb’s brain that he could remove via a craniotomy and Caleb had two operations to remove separate parts of his brain,” Kirsty said. “The results were really remarkable. Caleb was often going for 10 days without seizures after the operations but since then the seizures have slowly come back and with it further risk to his life, which Dr Tomycz had told us was possible because he’d had to leave some of the problematic tissue in the brain because they were vital to Caleb’s speech and movement.”
Caleb, who now has around 10 seizures a day and relies on his mother to sleep in the same bed as him each night to keep his seizures “under control”, gets little sleep as a result and is “constantly exhausted”. He spends much of his day in a protective rugby scrum-like cap because his condition has caused him to lose his balance often. It’s had such an impact on his daily life that he also can’t read or write to anywhere near the level of his school friends, Kirsty said.
“Caleb’s four-year-old brother Cameron is able to do 100% more than what Caleb is able to do. Caleb is wobbly – we’re constantly holding his hand. He wears a protective hat. He never has a chance to recover from his previous seizure before he has another one. It’s a nightmare.
“He attends a specialist school which is fabulous but he can’t read or write because of how little time he gets in school. We’re lucky if we get him in twice a week. And even if he was able to fully attend his learning ability is impacted greatly by the seizures.”
Kirsty says her family have had little choice but to set up a fundraising page, which you can see here, in a bid to get Caleb back out to the US for another operation to remove further brain tissue. “Dr Tomycz advised us to get Caleb some MEG scans," Kirsty added.
"We’ve been to Birmingham and Belgium to have further scans and from those Dr Tomycz has identified another part of the brain he thinks he can remove which could stop the seizures. We’ve now spent all of our savings on this and as a last resort we’re asking for financial support for Caleb’s potentially life-saving operation.”
