Oran Knowlson has become the first person in the world to have a device fitted into his brain to help with his epilepsy after he sometimes experienced hundreds of seizures a day.
‘It’s fantastic to see promising new technology that could help control seizures for syndromes that are so difficult to treat,’ Tom Shillito, health improvement and research manager from Epilepsy Action, told Social Care Today. ‘While this is of course at trial stage, we are very excited to see how it develops. We are hoping this will mean more options for people with epilepsy in the future, where medication isn’t successful in controlling seizures.’
Oran Knowlson, who is 13, was 12 when he had the operation, which was led by paediatric neurosurgeon Martin Tisdall, in October to fit the neurostimulator which now sits under his skull and sends electrical signals into his brain to help ease his epilepsy seizures. He was just three-years-old when he was diagnosed with Lennox-Gastaut syndrome, external – a treatment-resistant form of epilepsy.
Prior to receiving the neurostimulator device, Oran never experienced a day without having a seizure – sometimes he would have hundreds – which would often make him lose consciousness and stop breathing. As a result, Oran needed round-the-clock care.
The Somerset-based teenager received the surgery as part of a trial at Gosh in partnership with University College London, King’s College hospital and the University of Oxford. After having the device fitted, Oran’s mother, Justine, has explained that the family have ‘seen a big improvement, seizures have reduced and are less severe’.
Justine added: ‘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.’
Following Oran’s success story, the cadet pilot – Children’s adaptive deep brain stimulation for epilepsy trial – has plans to recruit three additional patients with Lennox-Gastaut syndrome, with a view to 22 being taken on in a full-time trial.
Signs of epilepsy:
Image: Hal Gatewood
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