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 had been referred 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 struggled through the next six months, as we had to wait for the initial Post-Mortem which indicated that no medical reason for Charlie’s death could be found. Lots of further tests needed to be carried out, including brain histology. Eventually we received the Coroner’s Inquest which recorded a Death from SUDEP. The Silent Killer!
Charlie had 2 massive seizures, and the second one caused a bleed to the brain, and ultimately killed him. Nobody can tell us categorically that he only had two seizures, because if he had been having nocturnal seizures, he may have had others that went unwitnessed.
We had never heard of SUDEP before the death of our gorgeous little boy. More worrying still, is that many people in the medical profession have also never heard of SUDEP; yet more people die per year as a result of SUDEP than to Cot Death and AIDS combined in the UK. We just don’t understand why SUDEP seems to be hushed up and not openly and very publicly acknowledged.
How does such a fun loving, full of life little boy suddenly drop down dead, and it goes unnoticed by the medical professionals? Our mission was to change the attitude of the NHS in order to make as many people as possible aware of this silent killer.
This was achieved in 2017 with the launch of Charlie's Story - The Simple Steps, which is a training package produced by South Western Ambulance Trust and has now been adopted by 9 of the 13 Ambulance Trusts in the UK as part of their mandated annual paramedic training.