World first epilepsy device fitted in boy's skull at Great Ormond Street Hospital
A teenager with severe epilepsy has become the world’s first patient to trial a new brain implant to control seizures.
Oran Knowlson had the device implanted at London’s Great Ormond Street Hospital in October 2023 at age 12 - and eight months on his daytime seizures have reduced by 80 per cent.
The rechargeable device is mounted onto the skull and is attached to electrodes deep in the brain to reduce seizure activity.
Up until the trial, the 13-year-old, who has Lennox-Gastaut syndrome, hadn’t had a single day without a seizure.
The pilot, called CADET, will now recruit three additional patients, before a full trial of 22 patients.
Oran’s Mum Justine said: “Before the seizures began Oran was hitting all his milestones but as seizures became more severe, we lost more and more of Oran.
“From being a happy, energetic three-year-old, he struggled to engage in the world due to his medication and seizures – but he has still got his sense of humour.
“We’ve tried everything, but this is the first real shot we’ve been given in years, there has been no ‘what next’ until now.
“Unless somebody takes the first step on a trial like this, there is never going to be a better and there has to be a better for our family.”
The device works by using Deep Brain Stimulation (DBS).
Unlike other DBS devices which are mounted on the chest with wires running up the neck to the brain, the trial device is mounted on the skull meaning the leads are less likely to break or erode as the child grows.
It is also rechargeable through wearable headphones, meaning it does not require surgery to replace it every three to five years.
The device was ‘switched on’ for Oran in December, and his family say they have seen a radical difference.
Justine said: “We’ve seen a big improvement, seizures have reduced and are less severe. That’s been great but the quality of life improvement has been invaluable for Oran.
“He’s a lot more chatty, he’s more engaged. He’s turned 13 and I definitely now have a teenager - he’s happy to tell me no. But that adds to his quality of life, when he can express himself better.
“The future looks hopeful which I wouldn’t have dreamed of saying six months ago. For Oran, having hope brings excitement.
“It makes the future brighter and more attainable even. I’m really pleased that Oran gets to experience that.”
Martin Tisdall, Consultant Paediatric Neurosurgeon at GOSH and Honorary Associate Professor at UCL, said he hoped the device could become part of standard treatment.
“For Oran and his family, epilepsy completely changed their lives and so to see him riding a horse and getting his independence back is absolutely astounding,” he said.
“We couldn’t be happier to be part of their journey.
“Deep brain stimulation brings us closer than ever before to stopping epileptic seizures for patients who have very limited effective treatment options.”
