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World first epilepsy device fitted in

UK boy's skull

Image caption,

Oran (R) lives with his mum, brother and sister

Fergus Walsh

Medical editor

  • Published

    7 hours ago

A boy with severe epilepsy has become the first patient in the world to trial a new device fitted in their skull to control seizures.

The neurostimulator, which sends electrical signals deep into his brain, has reduced Oran Knowlson’s daytime seizures by 80%.

His mother, Justine, told the BBC he was happier and had a “much better quality of life”.

The surgery was carried out in October as part of a trial at Great Ormond Street Hospital in London when Oran - who is now 13 - was 12.

Oran, from Somerset, has Lennox-Gastaut syndrome, external, a treatment-resistant form of epilepsy which he developed at the age of three.

Since then he has suffered several daily seizures ranging from two dozen to hundreds.

When we first spoke to Oran’s mum last autumn, prior to surgery, she explained how Oran’s epilepsy dominated his life: "It has robbed him of all of his childhood."

She told us Oran had a range of different seizures, including those where he fell to the ground, shook violently, and lost consciousness.

She said at times he would stop breathing and require emergency medication to resuscitate him.

Oran has autism and ADHD, but Justine says his epilepsy is by far the biggest hurdle: "I had a fairly bright three-year-old, and within a few months of his seizures commencing he deteriorated rapidly, and lost a lot of skills."

Oran is part of the CADET project, external - a series of trials assessing the safety and effectiveness of deep brain stimulation for severe epilepsy.

The partnership involves Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford.

The Picostim neurotransmitter is made by UK company Amber Therapeutics.


How it works

Image caption,

The device stimulates parts of the brain

Epilepsy seizures are triggered by abnormal bursts of electrical activity in the brain.

The device, which emits a constant pulse of current, aims to block or disrupt the abnormal signals.

Before the operation, Justine told us: "I want him to find some of himself again through the haze of seizures. I’d like to get my boy back."

The surgery, which lasted around eight hours, took place in October 2023.

The team, led by consultant paediatric neurosurgeon Martin Tisdall, inserted two electrodes deep into Oran’s brain until they reached the thalamus, a key relay station for neuronal information.

The margin of error for the lead placement was less than a millimetre.

The ends of the leads were connected to the neurostimulator, a 3.5cm square and 0.6cm thick device which was placed in a gap in Oran’s skull where the bone had been removed.

The neurostimulator was then screwed into the surrounding skull, to anchor it in place.


Image caption,

The device is screwed into the bone

Deep brain stimulation has been tried before for childhood epilepsy, but until now neurostimulators were placed in the chest, with wires running up to the brain.

Martin Tisdall told the BBC: "This study is hopefully going to allow us to identify whether deep brain stimulation is an effective treatment for this severe type of epilepsy and is also looking at a new type of device, which is particularly useful in children because the implant is in the skull and not in the chest.

"We hope this will reduce the potential complications."

That includes reducing the risk of infections after the surgery, and the device failing.



Image caption,

Oran's wireless headphones can recharge the device

Oran was given a month to recover from the operation before the neurostimulator was turned on.

When it is on, Oran cannot feel it. And he can recharge the device every day via wireless headphones, while getting on with things that he enjoys, like watching TV.

We visited Oran and his family seven months post-op to see how they were getting on. Justine told us there had been a massive improvement in Oran's epilepsy: "He is more alert and with no drop seizures during the day."

His night-time seizures are also "shorter and less severe".

"I'm definitely getting him back slowly," she said.

Martin Tisdall said: "We are delighted that Oran and his family have seen such a huge benefit from the treatment and that it has dramatically improved his seizures and quality of life."

Oran is now having riding lessons, which he clearly enjoys.

Although a nurse is on hand with oxygen, and one of his teachers is always nearby just in case, neither has been needed so far.

As part of the trial, three more children with Lennox-Gastaut syndrome will be fitted with the deep brain neurostimulator.

Currently, Oran gets a constant electrical stimulus from his device.

'The future looks brighter'

But in future, the team plan to make the neurostimulator respond in real time to changes in his brain activity, in an attempt to block seizures as they are about to happen.

Justine said she was most excited about this next phase of the trial: "The Great Ormond Street team gave us hope back…now the future looks brighter."

Oran’s family know his treatment is not a cure, but they are optimistic he will continue to emerge from the shadow cast by his epilepsy.

The Picostim neurostimulator, external, owned by Amber Therapeutics, has also been used to treat patients with Parkinson’s disease.


We would like to say thank you to Shinewater primary school, they did a school assembly about epilepsy and the children in reception got to wear purple in support of our daughter


This is Seren an amazing young lady, she raises awareness because her little brother and her cousin have epilepsy...
This young lady is a true purple hero 


So I have some news that we would like to share.

As I'm sure some of you are aware one of our wonderful members Sharon Vernon and her lovely mum Yvonne, were doing some fund raising for us during December.

They did tombolas and raffles and selling some bits.

We are so pleased to say that they have made over £1,500.00 for us...what an amazing amount.

They have also helped out at our summer car boot and so kindly had a collection for us when their beloved Dad/husband was taken by epilepsy last year...

So from all of us a massive Thank you to Sharon Vernon and her lovely mum



Today is #PurpleDay, a day dedicated to raising awareness for epilepsy worldwide.

Despite affecting approximately 625,000 people in the UK, there is still much work to be done to increase understanding and support for those living with this condition. Epilepsy can have a significant impact on a person's education, employment, ability to drive, and mental health, often leading to isolation and anxiety. Tragically, 1,200 people lose their lives to epilepsy each year.

Fortunately, we are lucky to have Epilepsy Sussex locally, who provide valuable advice and support to those affected by epilepsy and their loved ones. As someone who holds this charity close to my heart, I know first hand how crucial their work is.

While I understand that finances may be tight, any contribution you can make would be greatly appreciated. You can support their work through their website at

Sorry for having to highlight this.

But we have to Name & Shame HSBC for their unfair & inconsiderate fee charges

How it works HSBC charge EpilepsySussex  £5 a month for maintaining  account?  for what as there is no business manager in branch and no coin collection machine and none of the staff in branch have any business knowledge .

It costs us as a charity 40p for every cheque paid in ( this is called credit fee) it then costs us another 40p for HSBC to process the cheque ( this is called cheques collected)  So for every cheque to put in to our charity account it costs us 80p. So if we put a  £1.00 donation cheque in, the charity gets 20p and HSBC gets 80p.

It costs us 0.40% to put any cash amount into the account, but this still has to be counted and bagged up in the correct amounts and then paid in via the counter.

It costs us 40p to withdraw cash over the counter, also to withdraw cash on top of the 40p it costs us 0.40% to withdraw cash.

It costs us £17 if we do a CHAPS payment over the internet,

It costs us £20 if we do a CHAPS payment to HSBC over the phone

It costs us £30 if we do a CHAPS payment to another bank over the phone

These charges were brought in long after we opened  the account with HSBC, the way our charity constitution is written we have no point but to stay with them at the moment.

A charitable account falls under a business account now in most banks.

We understand that we are going to get charged, which is  still unfair to any small charity but what we don’t get charged for are BACS payments going into the account, PayPal payment going in to the account and payments from things like JustGiving, although PayPal and sites like just giving do take a small fee themselves, to minimis this if donating via PayPal  please make sure you tick the gift box. If setting up a JustGiving page or similar  please use the charity name and charity registration number ( please contact us for our bank details)

We can only use banks that have a branch in our town

So we pay a minimum of £60 a year, which is the cost of an anti suffocation pillow. During covid we were unable to fundraise or bring any money in , but that made no difference to HSBC they still changed us from a charity account to a business account . Although we pay no wages we still have overheads the same as any charity such as liability insurance, keeping the website running etc we try our hardest to keep costs to a minimum so having to pay all these bank charges and having no control over it is we believe disgusting.


Volunteer for us at events / bucket collections /  plus you will receive a one off EpilepsySussex badge , exclusively for you this is the only way to get one.


                 Thank you to the members who raised money for us on purple day 2023 


The team at epilepsySussex would like to say a big thank you to Gradient Consultant Ltd for the very big donation, this will help in funding pillows / id bands

You received a payment of £500.00 GBP from gradientconsultants

To see all the transaction details, please log in to your PayPal account. It may take a few moments for this transaction to appear in your account.

Transaction ID


Transaction date

28 Jul ‪2022 14‬:11:55 BST

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Description Unit price Qty Amount

EpilepsySussex £500.00 GBP 1 £500.00 GBP

Total: £500.00 GBP


It has come to our attention that when having the Covid jab some people are faking having a seizure and have said this is a reaction to the jab. As far as we know there is no evidence to suggest that by having the jab you will have a seizure, please ignore these idiots for putting these videos out on social media. if you have any real concerns please even phone NHS Direct or speak to your doctor

News to share with you, we've been working hard behind the scenes over the last few months and have secured some funding £1000 from the John Jackson Charitable Trust , this is essential funding for us to carry on our work .

EpilepsySussex would like to say a big thank you to the John Jackson Charitable Trust , this will help us in providing more pillows / CCTV / key safes / ID bands ect


 All events have been canceled due to COVID

Yes this does include us,
1 bucket collection
4 events and
3 coffee mornings
all cancelled so far

Luckily with our fundraiser the help from the Lions District group  / Waitrose / Member donations we have been scraping by to offer you the equipment that you still need
tough times ahead

  Here, we will discuss the potential health hazards in movies, including flashing lights (which can trigger seizures, migraines, or other issues), and motion sickness.

You can now appeal your PIP decision online:

Medical cannabis will be available on prescription within a month with 10,000 MS sufferers set to benefit


31 August at 03:43 



Hi everyone,

I want to make this post so we can all acknowledge the movie After Party, and the effects it can and is having on people.

I recently watched the trailer for this movie, and was so upset by what I seen.

During the trailer alone, it shows a young rapper having a seizure. but instead of showing the proper steps of what to do, in the movie it showed his friends and the audience video taping the seizure and laughing at him, after that event, the video went 'viral' throughout the movie and people started filming themselves doing 'the seizure boy dance' as well as calling the rapper 'seizure boy' and mocking him.

This makes me so sad and so worried.
After years on years of everyone's powerful efforts and hard work to help raise epilepsy awareness and education for us to feel safe and comfortable talking about epilepsy, a movie like this can cause doubt with some people, and that sets all our hard work back steps. 
It can make some of us feel unsure and afraid to talk about our epilepsy, and sadly it can even have some people think it is ok to make fun of epilepsy and people who have it, when its nowhere near okay to do that, what happens in the movie to the rapper is bullying, it is horrible, it is so wrong and it is not ok.

Epilepsy is not a joke, seizures are not a joke. I and many others around the world live with epilepsy everyday, we live with the shadow of not knowing when or where our next seizure will be and we live with knowing that sometimes people die from their epilepsy, it is called SUDEP (Sudden Unexpected Death in Epilepsy) Sometimes we lose friends, jobs and opportunities because of the stigma with epilepsy.
Doesn't sound too funny does it.

Many times over the years we have all witnessed the media portray seizures and epilepsy in the wrong and negative way. With education and awareness we CAN.... NO we WILL change this and help change the way society sees epilepsy so that when an actor, director, producer, host and so on sees something like this in the script, something so wrong, so misleading and so hurtful they will be aware, they will be educated and they will stand up for everyone effected by epilepsy and say no, that's not cool, no that's not right and make a change.

This is another time when we all have to come together, to take a stand, and encourage people to continue to speak out, and that we don't need to be afraid to speak about our Epilepsy and how it effects us. We need to come together and keep sharing our stories so that those who are afraid, those who feel alone, will know that they are not alone and that we are all in this together.

Keep sharing, keep telling your stories, keep saying no to the stigma and keep up the great work everyone, I am so proud of all of you.

Cassidy Megan 💜🙂
Founder of Purple Day














15 January 2018

The Government has rejected its independent PIP reviewer’s recommendation

that PIP claimants to receive their assessment report at the same time as they

receive their decision letter, click link below

























05 May 2018

GPs to stop giving prescriptions for these conditions by the end of May 2018

NHS bodies say from May 31st they will no longer fund items such as probiotics,

vitamins and minerals that are freely available from pharmacies and supermarkets.

Cough mixture, eye drops, laxatives and sun creams are among the products that

will no longer be routinely prescribed.

30 March 2018

CRACKDOWN Paracetamol BANNED on the NHS amid crackdown

on ‘free’ prescriptions for 35 minor conditions


16 January 2018

New published guidance on 18 over the counter items which should

not routinely be prescribed in primary care plus a new consultation

on proposals for a further 33 prescription items.


The 18 Items which should not be routinely prescribed in primary care:

A Consultation on guidance for CCGs,click link below.

Duke and Duchess of Sussex

We couldn't wish for a nicer two people welcome to our great county of Sussex

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Interested in giving back to your community, 3-4 hours a month

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