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Rachel Edwards
County Representative
I live in a small Cotswold village with my husband Peter, a Police Accident Investigator, and our two children Philip (4) and Victoria (2).
In 1997 we were enjoying life with our son Alexander, aged 12. He was very precious to us, as I had had numerous miscarriages prior to his arrival. He was
a pupil at Cheltenham College Junior School
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 In 1995 Alexander had been off school for a term with an infection called Mycoplasma. He never seemed the same following this. He was checked by a paediatrician consultant and 5 doctors, all said there was nothing to worry about.
Alexander was a very keen cricketer and had great promise, as he was a left-handed spin bowler. The only one in the whole of the Junior and Senior College. Young batsmen just could not adjust to him as they were all used to right handers.
On June 11th 1997 he was playing in a school cricket match against Millfield School when he suddenly collapsed. We arrived just after this to watch him play and walked right into the middle of this nightmare. The staff were wonderful and they and the ambulance personnel resuscitated him, he was then taken to Cheltenham Hospital and on to the John Radcliffe Hospital in Oxford.
1 week later we had to take the decision to switch off his life support machine and he died. The reason for his collapse was Dilated Cardiomyopathy, and he died of this and oxygen starvation to the brain.
We were absolutely shattered and our whole world collapsed with him on that dreadful day. We have never recovered and never will. Just learn to survive and go in a different direction. His death was followed by those of my parents and father-in-law over the next 3 years. After Alex’s death we were told that Dilated Cardiomyopathy was not hereditary, so went on to have our 2 little miracles, despite being told that my age was against me, I am now 47.
There was no support or counselling offered by the John Radcliffe. Our GP was superb and visited every week for the next 6 months, but no one told us about CRY. In the Summer of 2002 I read about CRY in the Daily Telegraph and got in touch. I found their help invaluable. After Alexander's death in 1997, and before we found CRY, we set up the Alexander Edwards Appeal and collected over £27,000 for paediatric intensive care equipment.
Towards the end of my last pregnancy I discovered through another article in CRY that the condition is in fact hereditary. We were absolutely horrified. In September last year we went to see Professor McKenna in London. He is now researching our family history and has found that my mother in law who died at the age of 52, in fact died from Hypertrophic Cardiomyopathy. So also did her mother. This means that we have the misfortune to have two separate cardiomyopathies occur in the same family, that are totally unrelated. My son has had several unexplained fainting 'episodes' (a significant sign of cardiomyopathy) and we have all been checked for the condition. At the moment we are all clear, but my husband and children are all high risk to inherit hypertrophic cardiomyopathy, and now it appears that dilated is inherited also. Our priorities and view of life has changed dramatically. We live life for the day and not for a long-term future that may never come.
Without CRY I would not have known that cardiomyopathy can be hereditary, and would not have had the support and infallible knowledge of Professor McKenna to help us.
I think the screening programme in schools is absolutely vital, and see this as CRY's big way forward in fighting against these dreadful conditions. I also feel that many doctors are all too ready to put symptoms down to "only a virus", as I was told with Alexander. Only a virus or bacteria killed my son. Symptoms must be taken seriously.
I will help CRY to raise awareness and save lives.
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 cry@c-r-y.org.uk
and we will put you in touch with someone who may be able to help
you.
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