Sudden Adult Death Syndrome has to be one of the cruellest ways to lose one of your children.
Typical victims have enjoyed healthy childhoods without incident or symptom and often take part in regular sport and exercise.
To nurture a child through a good start in life, only for them to be struck down on the cusp of adulthood must be devastating.
Luke Worgan was only 16 when he died a year ago and his parents Stephen and Hayley still do not know what caused his depth.
But they are using the anniversary of his death to raise awareness of heart disease in young people and highlight the work of Cry – Cardiac Risk in the Young.
Luke's brothers are coming to the end of a series of medical tests to ensure they do not suffer from any health of heart defects.
Unfortunately, youngsters are only screened if a relative has been affected. As long as there is no such screening for all children, other parents are at risk of suffering the same heartbreak as the Worgans.
