Tony Green reports on the charity that aims to raise awareness of previously-undetected heart conditions in young people

To date, the work of Surrey-based charity Cardiac Risk in the Young (CRY) doesn’t enjoy the media profile of other bodies raising funds and awareness for deserving causes.  The charity’s latest campaign hopes to change this situation for the better and, as a consequence, save lives. 

Thought-provoking postcards are being circulated featuring the photographs of eight young people who lost their lives to previously-undetected heart conditions.  This number of young people is known to die each week from such conditions.  James Paterson, from Esher, died suddenly in May 2002.  He was just 24. 

James’ parents, Alastair and Stephanie Paterson, consented to have his photo featured on the new postcard.  Their son’s death, they said, has become the defining moment of their lives. 

“He was in the RAF, was training to be a navigator, and he was about two years into his training,” said Alastair. 

“One normal day – they hadn’t been flying that day because the weather was bad and he had just been in the classroom – he went out to play five-a-side football. 

“Ten minutes into the game he collapsed and couldn’t be resuscitated.” 

Because he was in the armed forces, James had undergone health checks. 

When he was born, he was diagnosed as having a heart murmur, unrelated to the condition that led to his death, but, as a consequence had his heart tested three times.  With high-risk groups, the currently-available routine tests for pilots are not sophisticated enough to identify a problem. 

“Our concern is that he was going to be a fast-jet navigator,” said Stephanie. 

“If he had had a cardiac arrest in that situation, the loss of life would have been widespread. 

“This might have occurred while driving a car.  It does impact upon the lives of others as well as the person who has the condition.” 

“What we said at the time was that James died without warning and without explanation,” said Alastair. 

"I think what we have discovered in the meantime – largely through CRY and the medicals that we have been through and our two children – is that the closest we can get to is something called Long QT Syndrome.  It’s the best deduction that can be made from the information that there is.”

Long QT Syndrome causes an abnormality in the heart’s electrical system.  This can cause a rapid heart rhythm, which leads to a sudden loss of consciousness and may lead to sudden cardiac death. 

“In layman’s terms, what happened was he had a power cut,” said Alastair.  “For some reason, the electrical impulses from the brain to the heart ceased.” 

James was a fit young man, involved in sports as well as the fitness training in the RAF. 

“I don’t think we ever really knew this could happen before it did,” said Stephanie. 

Coming to terms with tragedy has been difficult. 

“Your life is never the same again,” said Alastair. 

"One of the things that would help is to know what happened and to try to do what we can to prevent it happening to other people. 

"It was a really wonderful thing for us to discover CRY and to meet other people in a similar situation, which has helped a lot.” 

It is for this reason that the couple now involve themselves in supporting CRY, to share their experience with other people and to find out more about what happened to their son. 

“We knew nothing about this when James died,” said Alastair. 

“The work that has been done, particularly by CRY, that we have learned about in the last three years leads us to believe this condition is being identified. 

“Because of that there are people alive today who wouldn’t have lived.”  

Legislation will help to fight coronary disease

Cardiac Risk in the Young (CRY) is a national charity raising awareness of potentially genetic abnormalities in young people.  The charity also offers bereavement support and promotes and subsidises screening for those at risk. 

Surprisingly, the high-risk group includes athletes, illustrated by the deaths of 25-year-old David Longhurst, a York City footballer who died during a televised match, and 22-year-old Adrian Hawkins, a cyclist shortlisted for the Barcelona Olympic squad.  He died just after winning a major race. 

The charity’s president is former England cricketer Ian Botham. 

The latest campaign follows the work of Dari Taylor, the MP for Stockton South, who drew up a private members’ bill, the Cardiac Risk in the Young (Screening) Bill.

The bill was not passed into law but elements will be adopted in new legislation later this year into the national service framework for coronary heart disease. 

The South East regional launch of CRY’s 12-month lobbying tour took place last week.  The charity’s founder and chief executive, Alison Cox, gave a speech. 

“By showing just some of the faces behind the stories we read and hear about all too often, we can help people to understand the heartbreak caused by this cruel killer and highlight the fact that it can happen to anyone, at any time – usually without warning,” she said. 

“Yet these eight faces – representing the eight lives lost a week in the UK – show just a snapshot of the problem. 

“We need to keep up the pressure and engage support from as many MPs as possible to make sure we can prevent other families from experiencing such tragic losses.” 

Stephanie Paterson has written to Esher & Walton MP Ian Taylor to ask him to join the all-party parliamentary group for Cardiac Risk in the Young. 

“What we are hoping to do is keep the profile of CRY in parliament with this parliamentary group,” said Alastair. 

There are 68 MPs in it so far, with a target total of 100,” said Alastair. 

“It’s only through parliamentary and media publicity that we can raise awareness, with a huge amount being done on the medical side. 

“Those two combined will result in more screenings and result in fewer people dying.” 

A spokeswoman and Ian Taylor’s office said the MP has already been sent several postcards and the MP has followed up the issue by writing to the health minister, John Hutton.