My beautiful fit and healthy son Ashley died 28th May 1998, he was 16 years old. He went to bed that night and didn't wake up in the morning. The official cause of death was an asthma attack. He had never had asthma, or even a hint of it.

Ashley was a keen athlete, he played football twice a week, took part in the London Brighton Bike Ride (56 miles), was a competitive runner and ran the 1500m for his athletics team.

He didn't suffer from many bugs that went around, his immune system seemed impenetrable! He even won awards for having no time away from school. Ashley was always looking towards another goal in his life. He tried so many activities; trampolining, badminton, roller skating, skateboarding, fishing, just to name a few! His main passion was football, which he played since the age of 6yrs old. At the age of 13 he bought a go-kart and enjoyed going go-karting with his dad.

Ashley had an enthusiasm and love for life that inspired everybody he met. He was a very quiet, gentle boy. Many of his friends described him as a jolly gentle giant, someone they could confide in and depend upon. Even I confided in him, he was my best friend and soul mate - So what went wrong? - Ashley's life will not have been done justice if I do not discover why he died and try to stop this happening to other people.

After months of research I discovered a condition that can occur with the 'electrics' of the heart (Long QT Syndrome) which can cause a fit and healthy person to die suddenly and unexpectedly, very quickly. This can be inherited or induced. I believe Ashley's was induced by the medication prescribed by our family doctor for hayfever.

When there is an outbreak of meningitis the whole country is horrified. Every parent checks their child for spots and any symptoms. Everyone knows the dangers of meningitis. I believe current research is now showing the chances of a young person dying from sudden adult death is greater than dying from meningitis; but how many parents or doctors suggest that a completely fit and healthy child is given heart monitoring to check for abnormalities of the heart. In one third of sudden arrhythmia deaths there are no symptoms shown prior to a sudden death.

Sudden deaths can be caused by a structural abnormality of the heart and can cause deaths such as left ventricular heart failure, as sadly experienced by Phil O’Donnell.  In some instances the heart is structurally normal but a chemical imbalance in the ion pores of the heart causes an abnormal heart rhythm.  In some instances this abnormality can be pronounced and without treatment sudden death may occur.  There are thought to be 500 sudden deaths of this type each year. In a study reported in the British Medical Journal, Heart, in January 2007, Behr et al suggested that there could be eight times more deaths than officially recognized.

The exertion caused by sporting activity puts additional stress on the heart which under extreme cases may trigger a cardiac arrest or an unidentified cardiac defect to cause a major problem. 27 year old Leicester City defender Clive Clarke was lucky after being quickly treated by paramedics with a defibrillator which restored his heartbeat after he suffered cardiac arrest during a game with Nottingham Forest.  However cardiac arrest can also affect people as they go about their normal day or even whilst they are sleeping.

SADS UK believes raising awareness about heart abnormalities with the general public and with health professionals is important.  The charity’s booklet ‘Heart Disease doesn’t just affect those in the later years of life’ gives important information and has been widely distributed.   SADS UK conferences also assist in people’s understanding, prompting doctors to further assess symptoms shown and people who are experiencing symptoms to seek medical advice.

The charity provides heart monitors to doctors’ surgeries to detect abnormalities of the heartbeat in order that these may be quickly detected and treated.  SADS UK also places defibrillators in the community to places such as schools and leisure centres to help save lives.  The quicker a life saving shock is received when a person suffers cardiac arrest the greater are their chances of survival.

SADS UK has members who have been detected with cardiac conditions; some who discovered they had a condition after suffering a cardiac arrest and being successfully defibrillated.   They are receiving treatment and leading fulfilling lives. Some people take daily medication and in more pronounced instances they also have a very small defibrillator implanted in their chest.  The defibrillator (ICD) will shock their heart back into rhythm if it becomes chaotic and dangerous.  

If you would like further information about SADS please contact Anne Jolly, SADS UK, Tel 01277 811215, e-mail info@sadsuk.org   www.sadsuk.org