"A TV programme about sudden cardiac death was the spur for my charity"

Alison Cox started CRY – Cardiac Risk in the Young – after her son was diagnosed with a heart abnormality.  This year the charity succeeded in supporting a Private Members’ Bill through Parliament, which will see the start of a screening programme for young people at risk of Sudden Cardiac Death.  Alison, 60, has two adult sons and a daughter and was married to tennis player Mark Cox.  She lives near the charity’s headquarters in Epsom Downs, Surrey. 

My younger son Steve was in America on a tennis scholarship when a routine ECG test picked up a heart abnormality.  He was just 18.  After an emergency angiogram and biopsy he was told, “You’ll never raise a sweat again.” 

Back in England it was confirmed that Steve had a potentially dangerous genetic cardiac abnormality that needed to be monitored and this ruled out top-level sport.  Further tests showed that I too carried the same abnormality. 

The thought:  We were told it was “just one of those things” and that Steve was “one in a million.”  Other memories nagged me though.  In my last year at school, one of my best friends had died mysteriously in the night.  Later, I knew a seemingly healthy top tennis player who suddenly dropped dead. 

The action:  I asked cardiologist Professor Bill McKenna, who worked in the field, what he needed most for his programme.  He said a machine to take echocardiograms, which cost £120,000.  I launched a skipathon and raised £10,000.  One of the women who worked for the company that made the equipment, donated her bonus, which brought it down to £70,000.  Within three years we’d reached our target.  For research purposes they needed to be able to screen super-fit people.  My background was in tennis and, with the support of tennis player Jeremy Bates, we set up the first cardiac screening programme in sport in the UK by testing elite tennis players. 

Take off:  Bill and I often spoke about starting up a charity.  In 1994, a TV programme was made about sudden cardiac death and I was interviewed for it.  The programme proved to the spur, but we didn’t have a name for the charity.  Then we came up with CRY. 

In the box room:   We had a large family house but the box room was the only place I could find for a tiny desk and my mounting paperwork.  I knew nothing about hearts except they appeared on the front of Valentine cards, but our chairman and our financial director insisted I become chief executive.  I had been a full-time wife and mother up until then and had to learn what to do by trial and error.  We started CRY with a £30 debt, which was the fee to register the name. 

Today:  We have 12 members of staff, a two-storey office and I now know that Steve’s case was not one in a million.  In fact, eight apparently fit and healthy young people are dying every week from heart conditions they do not know they have.  Cardiomyopathy, my son’s diagnosis, is the commonest heart defect,  causing problems with the pumping of the heart. 

Sport often reveals it as it is the sporty who put their hearts under strain.  CRY’s major achievement is to support a Private Members’ Bill this year, which is the first step to setting up a national screening programme to identify, screen and treat those at risk. 

My life:  Steve, who is fine since he gave up competitive sport, works for the charity with me, and having studied psychology, is looking at the psychological impact of proactive screening.  We have a long way to go, but I never imagined that I’d be running a charity that would help initiate change in Government health policy.