As CRY Representative for Oxfordshire I hope to raise much needed awareness for CRY and all it stands for. Cardiac Risk in the Young, in its many and varied forms, is often a hidden time bomb ticking away undetected. Simply put, this needs to change! Having experienced from close quarters what such a death means, the tsunami of sheer and utter helplessness and despair it leaves in its wake, I feel honoured and proud to act as CRY Representative.
If only one family can be spared from experiencing the devastating effects, every effort made will have been worth it.
My 23 year old son Adam simply went to sleep one night in July 2011, to never wake up again. As in so many other cases, there were no prior symptoms whatsoever. He was a fit young man who never smoked and didn’t do drugs. He wasn’t fanatical about active sports, but he regularly cycled and walked. In his teens, Adam was a keen and very successful rugby player with three county championships under his belt. He never had any serious illnesses and had the strength and constitution of the proverbial ox.
How was it possible that such a young and seemingly healthy young man went to bed one night and died in his sleep? We, his family, were suddenly faced with the unthinkable, the unbelievable and the “this only happens to others” syndrome. Reality is brutal and hit home like a full frontal train crash; no words can begin to describe it.
The initial autopsy proved inconclusive other than “sudden cardiac death”. Subsequently samples were sent to Dr Mary Sheppard, who diagnosed LVNC (left ventricular non-compaction), an exceedingly rare hereditary disease. Thankfully my other son Anthony was immediately checked via a CRY screening and subsequently referred to the London Heart Hospital for more extensive tests and given the all clear.
To date, genetic testing is ongoing and as yet no conclusive link why Adam had the condition could be established. It could be as freaky as spontaneous mutation, although we suspect that it is not as there is cardiac history in Adam’s paternal family. Gene testing is still in its infancy and we are grateful that the investigation is on-going, but we may never know how exactly Adam’s LVNC developed.
Adam’s condition is an extremely rare one and we feel certain that if it hadn’t been for Dr Sheppard and the excellent work she is doing on behalf of CRY, we might never have known the real cause of his passing. Dr Sheppard’s diagnosis provided us with an answer as to the ‘how’ Adam died. After months of uncertainty and not knowing the cause of death, establishing the cause was a big step towards our healing process and finally acceptance of the unthinkable. The sheer monstrosity of the event now had an explanation, it had a name – it was something we could hold on to. Knowing the ‘how’ Adam died didn’t take away the pain, though, but CRY helped me enormously during the initial trauma.
In taking on the role CRY’s Representative for Oxfordshire, I hope to propagate awareness of cardiac risk in the young. Nothing can bring my darling son back, but in taking a more active role I feel I honour Adam’s memory; my way of somehow turning his untimely passing into a positive legacy. In summation, if only one family can be spared from such a fate as befell mine, every effort is worth it!
If you would like to contact one of our Representatives or a Bereavement Supporter please call the CRY office at 01737 363222 or e-mail firstname.lastname@example.org and we will put you in touch with someone who may be able to help you.