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Barrie Burns

Charlie Farley's Page SUDEP Awareness

Raising Awareness of SUDEP - The Silent Killer for SUDEP Action because they are the only UK charity for SUDEP Awareness

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SUDEP Action

We raise awareness of SUDEP, epilepsy risks to prevent deaths & support those bereaved

Story

Charlie Patton Burns 04 Oct 01 ~ 11 Oct 11

Sudden Unexpected Death in Epilepsy (SUDEP) – The Silent Killer

Until the 07 Oct 11 Charlie was a perfectly fit and healthy 10 year old boy.  Four days later on the 11 October 2011, a week after his 10 birthday our gorgeous little boy died. 

Charlie had his first witnessed seizure on Friday 7 October 2011.  His 15 year old sister, Isabella, was home from boarding school and was very frightened about the entire episode.  The Paramedics arrived some 12 minutes later and took over until Charlie regained consciousness at about the 15 minute point.  They incorrectly diagnosed as a Febrile Convulsion.  How wrong they were!!

Over the weekend Charlie was fine but we were not happy with the diagnosis, on Monday 10 Oct, we took him to see our local GP.  Charlie explained that he often woke up during the night gagging and needing a drink and quite often couldn’t feel the rest of his body.  Our GP suggested that Charlie might be suffering with Nocturnal Epilepsy and referred him for an emergency appointment to see a Neurologist.  The earliest available appointment was the 18 November 2011. 

On Tuesday 11 Oct 11 we made a decision to visit our daughter as she had returned to her boarding school on the Sunday and was very concerned about Charlie.  We took her out for tea in order to show her that Charlie was fine and that he has been referred him to see a specialist.  We had a lovely evening and Isabella felt much better having seen Charlie, who was his normal self and we had such a happy and funny time together.

Charlie went to bed that evening at 8:45 pm, an hour later he had died.  We were downstairs and heard nothing!  

We have struggled over the death of Charlie but knew we had to make something positive come from such a tragic situation.  We have battled against the NHS and this year (2017) has seen the release of a brand new training package for all Paramedics and other professionals within the NHS.  It is called 'Charlie's Story' and has been made in collaboration between us, South Western Ambulance Trust and SUDEP Action.  

The training consists of a video and powerpoint lessons and is being used in the annual training.  This is the first training pack of its kind and is being presented to Parliament with the aspiration that the training will be mandated across the UK.

We also have the honour to have received the Spire FM and Salisbury Journal 'Local Hero Award' for Charity Fundraisers 2017, testament to the support you have all given to us along our journey.  Thank you to everyone that believed in us and more importantly, helped us to fundraise and raise awareness of this silent killer.

 So please dig deep and donate now.

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