Until the 07 Oct 11 Charlie was a perfectly fit and healthy 10 year old boy. Four days later on the 11th October 2011, a week after his 10th birthday our gorgeous little boy died. Charlie’s case is a bit different to those that are already on the SUDEP site, because Charlie was not diagnosed with Epilepsy. Charlie had his first witnessed seizure on Friday 7th October 2011. This was incorrectly diagnosed as a Febrile Convulsion and he was not taken to hospital by the Paramedics, although he had been unconscious for at least fifteen minutes. Not happy with that 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 18th November 2011, an appointment that Charlie did not survive to see. The following day, after his visit to the Dr we bought a baby monitor, thinking that it would notify us if any further incidents happened at night, until we were able to see the Neurologist. The baby monitor needed to be charged for 12 hours before we could use it–this was too late. Charlie went to bed on the 11th October 2011 having had a normal day and an hour later we went to check him before we went to bed, Charlie was unconscious, had bitten his tongue and been sick. He never regained consciousness despite 40 minutes of CPR and endless efforts from two Paramedic Teams, was pronounced dead at Salisbury District Hospital by the Emergency Team. We have struggled over the last sixteen months, as we had to wait for Post-Mortem results, and then the Coroner’s Inquest on the 30th March 2012. Parents are not kept very well informed, and had we not rung the paediatric pathologist direct, we believe we would still be waiting for answers. The initial Post-Mortem indicated that no medical reason for Charlie’s death could be found. Lots of further tests needed to be carried out, including brain histology. We saw specialists, and spoke to many people. My sister-in–laws GP (300 miles away) straight away diagnosed Charlie’s death as SUDEP, but when we discussed this with medical professionals, we were told categorically that somebody couldn’t die from SUDEP unless they were registered as suffering with epilepsy. We were also told that the only reason for a SUDEP death is if medication was not correct or wasn’t taken properly. 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 un-witnessed. From the advice given to us several concerns have been identified. 1st, 2nd, and even 3rd seizures don’t always count towards a diagnosis of Epilepsy. Even more concerning is that medical advice given to parents is that their child cannot die from SUDEP unless they don’t take their medication properly, and a child cannot die from their first or second seizure. 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, and yet more people die per year as a result of SUDEP than to Cot Death. Everybody knows about Cot death, and nobody knows about SUDEP. We just don’t understand why SUDEP seems to be hushed up and not openly and very publically acknowledged. We have since leaned that Charlie fell into a high risk category due to his age, gender and the fact that his seizures appeared to be nocturnal. 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 in life is to make as many people as possible aware of this silent killer. We want to try and stop other families going through what we’re currently going through. An appointment has been made with our local MP and we are currently working to raise local awareness, starting at Salisbury District Hospital and Great Western Ambulance Service. Jan, Baz and Izzie Burns