I can only remember it as an ongoing nightmare. My distressed mother woke and directed me to Michael's bedroom. Michael lay on the floor on his left side with his knees curled up to his chest. As I turned Michael on his back he took one long shuddering breath and then was still. There was no pulse and no apparent heartbeat. I commenced mouth to mouth resuscitation and my mother phoned for an ambulance 3 times before it eventually arrived half an hour later. In the meantime, she contacted Geoff, who had been sorting out bits and pieces to do with our business. On arrival he immediately took in the situation and helped me to try and revive Michael.

When the ambulance men eventually saw Michael, they were not hopeful and gave him oxygen via a face mask before taking him to the local hospital. The hospital A & E department tried to resuscitate him but eventually told us that there was nothing more they could do. My fear by then was that if he was resuscitated he would be badly brain damaged.

We passed the next week in a daze. The only official contact being from the police who had had to seal off and search Michael's room
as it was an unexpected death. It was four days before the results of the post mortem were made available to us. A close friend and
her husband took over the running of our business for us. We met our youngest daughter at the airport with the terrible news. The funeral had been delayed because we knew that she would want to be there.
 

The death certificate stated that Michael had died of idiopathic cardiomopathy and that he had died of natural causes. I just could not
understand how a fit and healthy 21 year old could have died of natural causes. I wrote to Aldershot where Michael had undergone a
medical assessment a few weeks earlier. He was delighted when he was passed medically fit and offered a career in the army. They
wrote back to say they could not reveal the information I was asking for. When I wrote to the coroner, he sent a kind letter back in reply
but was unable to give me any further information. The coroner then passed my letter onto Michael's GP: It was the doctor who had
treated Michael for a viral infection who visited us. She had been on holiday when the news of his death had been sent to the surgery.
As she was not his regular GP she had not known of his death immediately. She was very kind and likened his death to Infant Cot Death in Children. We were told that he would have needed a heart transplant had he lived.

I still felt that I did not understand. When I worked as a health visitor I had understood that it was not possible to diagnose the cause of the cot death. Michael had died of a cardiomyopathy and therefore there was a specific cause of death. I wrote several more letters trying to obtain the information that I felt would help me understand why our son had simply got up from his bed in his room and died.
 

The breakthrough had come when we saw a programme on the TV that featured Sudden Death Syndrome. Listening to Professor
McKenna we then began to understand what had happened. We wrote to him and it was through him that we were all eventually offered
an ECG and an echocardiogram. The letter he wrote back also informed us about an organisation that had just been started by Alison
Cox and offered support to families who had lost a close relative with SDS. Although I contacted them, apart from leafing through their
magazine, which I found almost too painful to read, I did not pursue any contact with CRY at that time.

It was not until some years later that I phoned CRY for some reason and talked to someone called Fran. We must have talked on the phone for over an hour. I then phoned back on several occasions and was always delighted to find Fran on the other end of the phone. At first the talk was of Michael and then turned to other things. Also she sent me a lot of information and finally an invitation to the first Bereavement Support Day.

It was a day that was both painful and very informative. In the morning there were several highly qualified speakers including Professor
McKenna who talked about the conditions that can lead to SDS. Another speaker spoke of the role she played in training interested
members of CRY, most of whom had experienced a similar bereavement, to become Bereavement Supporters. This made an impression on me, especially as just talking to Fran on the phone had helped me so much. I found that talking to someone outside the family allowed me to talk freely without causing pain to others.

Since then, I have had a lot of contact with CRY. I now have a better understanding of what it is trying to achieve. I am currently taking a course on counselling skills and theory to become a Bereavement Supporter. Undertaking the course has also helped enormously. I now find that I can talk of Michael where before I was reluctant to as it always ended with me in tears. I now hope that I can help someone in the same way I was helped.

CRY is now beating the drum at Parliamentary level, trying to focus awareness on abnormal heart conditions in the young. A very strong case has been put forward for the raising of awareness amongst all medical personnel, arranging for the necessary screening of close relatives, and a set of procedures for giving information to relatives.
 

Screening would have alerted us to Michael's heart condition and may well have extended his life. Italy has in place a mandatory obligation to screen everyone who represents competitive sport; this includes all school children. I look for the day when we can do the
same in this country for all young people.
 

It is 15 years since Michael died and I am now very involved with our five grandchildren, the youngest almost 3 months old. For them
alone I would like to see mandatory screening of young people.

Vera Looker