My Story

These pages will be for you to share you experiences with others. If you would like your story to be included please email cry, with photos if you would like, and we will publish them here.

Simon Jon Cullum

Simon was my oldest son, born on 6th October 1977. He was fit and healthy, a normal 29 year old who didn't drink or smoke.

On Friday 8th June 2007 I came home from doing some shopping to find Simon sitting at the computer. On my arrival he came into the kitchen and we had a conversation about what we would be having for dinner that evening, and then he went up to his bedroom to go on the Playstation. It was around 11.45am.

At 12.45pm I noticed that his car keys were still in the kitchen and he had an appointment in town at that time. I called him and got no reply. When I went up to his room I found him collapsed on the floor! Luckily I had a friend with me (Simon's Godfather) so I called to him and he came up and started CPR while I dialled 999.

The ambulance was there within 2 minutes and they worked on Simon for 30 minutes - but there was nothing they could do. I actually knew he was gone when I found him.

I was told by the Coroner on the Monday that there was no obvious cause of death and that it was probably Sudden Adult Death Syndrome - and there would be an Inquest. We really couldn't get our heads round the fact that nobody could tell us why Simon died. Like many others I gave permission for his heart to go to Brompton Hospital for tests which came back saying they too found nothing.

Robert really struggled with the " Natural Causes " statement, as we all did.

While this was going on I was advised that myself (Marilyn), my husband John and our youngest son Robert should all have an ECG. Robert had his first and that was fine. A couple of days later John and I went for ours. John's was fine but it showed on mine that I have Long QT Syndrome.

Simon's Inquest is still ongoing so I informed the Coroner of my condition which he said he would pass on to the doctor doing Simon's Inquest. I still don't have a proper Death Certificate, as his death cannot be registered until all tests are finished. It is horrible not having any answers as to why a fit and healthy 29 year old dies - but I now tell myself that Simon probably had Long QT the same as me.

Robert and myself are now waiting for an appointment to have an Echocardiogram.

Its not until something like this happens to you that you discover just how many young people are dying, and I am so glad that a charity like CRY exists. I have found the information I have received from them very helpful and would like to say a big 'Thank You' to everyone involved at CRY.

Life will never be the same for us again without Simon in our lives - and his death has also greatly affected all his friends too.

I'm so glad that I am able to share my story with others who are suffering in the same way and my heart goes out to you all.

Marilyn Cullum

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