CHARLIE Burns, who was born in Osnabrück, was an apparently fit and healthy child until October 2011, when he suffered two seizures within days of each other and passed away.
His distraught parents, from Bulford in Wiltshire, were then left to face an agonising five-month wait until an inquest confirmed that he had died from Sudden Unexplained Death in Epilepsy (SUDEP).
The condition claims at least 1,000 lives in the UK each year – more than AIDS and cot death combined – yet few people have ever heard of it.
The family’s heart-breaking story was highlighted in the House of Commons by a Conservative MP to help raise awareness of the deadly disorder.
“It was a huge shock, but my mission in life now is to make as many people as possible aware of this silent killer.
“My main concern is that my son died of a condition nobody knows about – a lot of medical professionals don’t even know what it is. All parents have a right to know this condition exists.”
Searching for answers
Charlie had his first epilepsy seizure on 7 October 2011, but after being checked over first by paramedics and then by a GP, was found dead in bed four days later.
Initially, he was diagnosed with the less-serious febrile convulsion but their GP, who suspected an epileptic seizure, had booked Charlie in for emergency tests – which had a five-week waiting time.
My mission in life is to make as many people as possible aware of this silent killer – Jan Burns
“It is indescribable. It was just shocking – it all happened so quickly,” said his dad Barrie, a WO2 in the Royal Engineers currently serving at HQ Infantry, Warminster. “On the Friday he was a cheeky chap without a care in the world. By the Tuesday night he had died.”
Since then, Jan and Barrie, who have a 16-year-old daughter Izzie, have been diligently searching for answers.
“We were told categorically somebody couldn’t die from SUDEP unless they were registered as suffering with epilepsy and Charlie hadn’t been diagnosed yet,” said Jan.
“We have since learned that Charlie fell into a high-risk category due to his age, gender and the fact his seizures appeared to be nocturnal.”
The bereaved parents feel that epilepsy and SUDEP should be discussed more openly and that others should know more about the risks.
The family decided that some good must come out of such an awful situation.
Jan explained: “Our family and friends wanted to help and many people approached us with fundraising ideas.
“We began to run events, took part in interviews, and did everything we could to promote SUDEP Awareness.”
“Izzie came up with an idea that every year Charlie would be a year older, so every year we need to add another £1,000 to our target,” said Jan.
Claire Perry, MP for Devizes and now a patron of the charity, said a review was needed of the guidance given to medical professionals to help them look out for seizures in otherwise healthy children.
As a result, SUDEP Action has launched the Government-supported Epilepsy Deaths Register, which makes every epilepsy case count. Visit www.sudep.org for more information.
If you are over 18 and know about a death in someone with epilepsy, you can help by providing information.
The data will assist medical professionals, but your personal details will remain confidential. The introduction of the Register will highlight the scale of the problem. If you can help the Burns family by organising an event to raise money for SUDEP Awareness, email firstname.lastname@example.org
Donations can be made through justgiving.com/SUDEP-Awareness or by texting “CHAZ96 £5” (or alternative amount) to 70070.
There’s also a Facebook page called Charley Farley’s SUDEP Awareness.
Barrie added: “We would love people to get together and create their own event, and as such we are calling it a Soldiers 4 SUDEP. Please get in touch via our Facebook or email.”
What is a seizure?
The person goes stiff, loses consciousness and could fall to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely, due to irregular breathing. Loss of bladder and/or bowel control may happen. After a minute or two the jerking movements should stop and consciousness may slowly return.
What to do if someone is having a seizure
Protect the person from injury by removing nearby harmful objects
Cushion their head
Look for an epilepsy identity card or identity jewellery
Aid breathing by gently placing them in the recovery position once the seizure has finished
Stay with the person until recovery is complete
Be calmly reassuring
Restrain the person’s movements
Put anything in the person’s mouth
Try to move them unless they are in danger
Give them anything to eat or drink until they are fully recovered
Attempt to bring them round
Call for an ambulance if…
You know it is the person’s first seizure
The seizure continues for more than five minutes
One tonic-clonic seizure follows another without the person regaining consciousness between seizures
The person is injured during the seizure
You believe the person needs urgent medical attention.
- Occurs when a person with a history of epilepsy or seizures dies suddenly and prematurely and no other cause of death is found
- The first seizure or any seizure lasting longer than five minutes should be referred to a medical expert
- There are around 40 types of seizures and a person may have more than one type
- Epilepsy can affect anyone, at any age and from any walk of life
- 456,000 (or 1 in 131 people) in the UK have epilepsy
- Every day in the UK, 75 people are diagnosed as having epilepsy
- At least 1,000 people per year in the UK alone die of epilepsy related issues, more than Cot Death and AIDS combined
- 400 of the 1,000 deaths could be avoided
- Young adults with epilepsy are almost 24 times more likely to die of SUDEP
- SUDEP deaths in the UK have risen by 31% in recent years.