On January 30th, our son James died suddenly at home with no warning or indication that anything was wrong with his health. 

He was a fit, active, normal teenager with a love of music and people and had everything to look forward to.  The shock and grief we feel is hard to bear and almost impossible to describe because of its sudden and unexpected nature. 

In the days following James’ death, we had no idea why he had died but after finding the web site of Cardiac Risk in the Young (CRY) we became aware of Sudden Arrhythmic Death Syndrome and have since seen a consultant who confirmed he died from heart arrhythmia. 

CRY is a charity founded in 1995 to raise awareness of Cardiac Risk in the Young, Sudden Cardiac Death and Sudden Death Syndrome.  It offers support to families in our position in the form of counselling and runs a screening programme to help save lives and assist in vital research into cardiac conditions that cause between four and eight apparently fit and healthy young people to die every week in the UK. 

The screening of families who have suffered the loss of an immediate family member is vital and is a major part of the Cardiac Risk in the Young (Screening) Bill introduced by Dari Taylor, MP for Stockton South, which was debated in the Commons on March 12th. 

We know our lives will never be the same again but we also know we are not the only family to suffer loss in this way and feel that by raising awareness of this problem we can at least try to gain something positive from the tragic loss of James. 

Tim Loughton, Shadow Minister of Health and our MP, has been very helpful.  He spoke at the CRY cross-party reception on March 10th and was one of the many MP’s who spoke in favour of Dari Taylor’s Bill. 

As a result of this Bill and lobbying by CRY families, the Department of Health has acknowledged that a gap in provision of services has been identified and has agreed to set up an expert group to report on a new chapter on Sudden Death Syndrome being included in the National Service Framework (NSF) that will help identify and screen those perceived to be at high risk of being affected by these conditions that can kill so swiftly and mercilessly. 

This is a huge achievement and the introduction of guidelines into the NSF that we can now anticipate, will undoubtedly save young lives.