LONDON (dpa-AFX) - A 13-year-old boy with severe epilepsy became the world's first patient to be fitted with a device on his skull to control seizures.
Since the age three, Oran Knowlson from Somerset, has been suffering from Lennox-Gastaut syndrome, a treatment-resistant form of epilepsy which causes regular seizures, behavioral problems, and learning difficulties.
'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,' Oran's mother Justine Knowlson said.
'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.'
As a part of Children's Adaptive Deep brain stimulation for Epilepsy Trial, Oran underwent a life-changing procedure at London's Great Ormond Street Hospital in October 2023, where a rechargeable device was mounted onto his skull, and electrodes were connected to the brain to reduce seizures.
The device, manufactured by Amber Therapeutics, blocks the abnormal signals that cause epilepsy seizures. Since then, his number of seizures has changed drastically.
Justine Knowlson said, '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 pilot trial, funded by the Royal Academy of Engineering, will now recruit an additional three patients suffering from Lennox-Gastaut syndrome. Meanwhile, 22 patients will participate in a full trial funded by GOSH Charity and LifeArc, and sponsored by University College London, Daily Mail reports.
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