The first child will receive a skull-mounted anti-epileptic device as part of a British clinical trial

Oran, who had suffered from severe seizures for eight years and often required resuscitation, was the first child in the UK to have the device implanted at Great Ormond Street Hospital in October 2023, when he was 12 years old. Now, eight months later, thanks to this device, the frequency and severity of his seizures have decreased dramatically.

The rechargeable device is mounted on the skull and connected to electrodes deep in the brain to reduce seizure activity. This is the first clinical trial in the UK to evaluate this type of treatment for children with epilepsy. The CADET (Children’s Adaptive Deep Brain Stimulation for Epilepsy Trial) pilot trial will now recruit three additional patients with Lennox-Gastaut syndrome, funded by the Royal Academy of Engineering, before 22 patients take part in the full trial, funded by GOSH Charity and LifeArc. The study is sponsored by UCL.

Every day we see the life-threatening and life-limiting effects of uncontrolled epilepsy. It can make school, hobbies, or even watching your favorite TV show completely impossible.

For Oran and his family, epilepsy has completely changed their lives, so seeing him ride horses and regain his independence is absolutely amazing. We couldn’t be happier to be a part of their journey.

Deep brain stimulation brings us closer than ever to stopping seizures in 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 epilepsy in children and hope this will become a standard treatment we can offer in the coming years.”

Martin Tisdall, Honorary Associate Professor at UCL and Consultant Pediatric Neurosurgeon at GOSH

The story of Oran

Oran’s seizures began two weeks after his third birthday, and until his trial he had never had a single day without a seizure.

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

Unfortunately, Oran’s epilepsy worsened, which often meant he stopped breathing and needed resuscitation. This meant that Oran needed 24-hour care because seizures could occur at any time of the day and his risk of sudden unexpected death in epilepsy (SUDEP) was significantly increased.

Oran’s mum, Justine, said: ‘Before the seizures started, Oran was reaching all his developmental milestones, but as the seizures became more and more severe, we lost more and more of Oran. From a happy, energetic three-year-old, he has struggled to connect with the world due to medications and seizures – but he still has a sense of humor.

“We’ve tried everything, but this is the first real chance we’ve had in years, and until now there was no answer to the question ‘what next?’

“Unless someone takes the first step in a process like this, it will never get better, and it has to get better for our family.”

In October 2023, Oran underwent surgery to have the device fitted, and after recovering from the procedure, the device was “switched on,” providing continuous electrical stimulation to Oran’s brain. Since then, life for Oran and his family has completely changed.

Oran’s mum, Justine, said: “We have been on since December and have seen great improvement, the seizures have reduced and are less severe. That’s great, but the improvement in quality of life has been invaluable for Oran.

“He is much more talkative, more engaged. He’s turned 13 and I definitely have a teenager now – he’s happy to say no to me. But it adds to his quality of life when he can express himself better.

“The team really supports you. Since August last year (when we took the tests), we have never felt alone. They made us feel like part of the team, as did Oran.

“The future looks promising, something I couldn’t even dream of half a year ago. For Oran, having hope is exciting. This makes the future brighter and even more achievable. I’m very happy that Oran can experience this.”

CADET pilot and trial program

Deep brain stimulation (DBS) is a surgical procedure that involves implanting a small device that stimulates specific parts of the brain.

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

This device can also be charged via wearable headphones, which you can use while watching videos or interacting with your tablet. This also means it doesn’t require surgery and replacement every three to five years.

Professor Tim Denison, University of Oxford and Royal Academy of Engineering, Principal Engineer, said: “Our mission is to design pioneering research systems to explore treatment options for incurable conditions such as childhood epilepsy. Oran is the first child in the world to receive this device and we are extremely pleased that it has had such positive benefits for him and his family.”

The device targets the thalamus, which is the center of electrical signals in the brain. The hope is that the device will block electrical pathways and consequently prevent seizures from spreading. The device also has seizure pattern optimization settings, which, although not used in this study, may be used in the future for patients with LGS.

The CADET pilot is funded by the Royal Academy of Engineering and sponsored by UCL. It is the result of cooperation between UCL, GOSH, King’s College London, the University of Oxford and the British company: Amber Therapeutics.

The second phase of the study will be funded jointly by the GOSH Charity and LifeArc Translational Research Accelerator grants.