A 13-year-old boy has made history as the first patient in the UK to take part in a clinical trial using deep brain stimulation (DBS) to treat epilepsy.

Since the procedure, Oran’s daytime seizures have decreased by 80%, significantly improving his quality of life.

Surgeons at Great Ormond Street Hospital mounted a rechargeable device to Oran’s skull and attached it to electrodes deep in the brain to reduce seizure activity.

This is the first UK clinical trial measuring this type of treatment for children with Lennox-Gastaut syndrome, a rare form of epilepsy, and involved multiple teams from research and development, surgery, nursing, neurology teams, imaging, anaesthetics, neurophysiology and many more.

The CADET (Children’s Adaptive Deep brain stimulation for Epilepsy Trial) pilot will now recruit three additional patients, before 22 patients take part in a further trial, funded by GOSH Charity and LifeArc. The study is sponsored by University College London (UCL).

Martin Tisdall, Consultant Paediatric Neurosurgeon at GOSH and Honorary Associate Professor at UCL, said: “Every single day we see the life-threatening and life-limiting impacts of uncontrollable epilepsy. It can make school, hobbies or even just watching a favourite TV show utterly impossible.

“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. 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. We are excited to build the evidence base to demonstrate the ability of deep brain stimulation to treat paediatric epilepsy and hope in years to come it will be a standard treatment we can offer.”

Oran’s seizures started when he was three and up until the trial he was having seizures every day.

Many of his family have a mutation in the SCNIB gene, but all now have control of their epilepsy and seizures.

Unfortunately, though, the boy’s seizures became more severe, meaning he often stopped breathing and needed resuscitation.

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.”

Oran had surgery in October 2023 to insert the device and once he had recovered from the procedure the device was “switched-on”, delivering constant electrical stimulation to Oran’s brain, transforming both his and his family’s lives.

The CADET pilot and trial

Deep Brain Stimulation (DBS) is a treatment involving surgery to insert a small device which stimulates specific parts of the brain.

Unlike other DBS devices which are mounted on the chest with wires running up the neck to the brain, this device is mounted on the skull meaning the leads are less likely to break or erode as the child grows.

This device is also rechargeable through wearable headphones, which can be used while watching a video or interacting with a tablet, and so doesn’t require surgery to replace it every three to five years.

Professor Tim Denison, University of Oxford, who is the lead engineer said: “Our mission is to design pioneering research systems for exploring the treatment of intractable health conditions such as paediatric epilepsy. Oran is the first child in the world to receive this investigational device and we are extremely pleased that it has had such a positive benefit for him and his family.”

The device targets the thalamus, which is a hub for electrical signals in the brain. It is hoped that the device will block electrical pathways and consequently stop seizures from spreading. The device also has settings for optimisation towards seizure patterns, which although not utilised in this trial, could be used in the future for patients with LGS.

The CADET Pilot is funded by the Royal Academy of Engineering and sponsored by University College London. It is a collaboration between GOSH, UCL Institute of Child Health, UCL, King’s College London, the University of Oxford and a UK-based company: Amber Therapeutics. All research at GOSH is supported by our NIHR GOSH Biomedical Research Centre.

The second phase of the trial will be jointly funded through GOSH Charity and LifeArc’s Translational Research Accelerator Grants.