Looking at five-year-old Jack Willn, you would never imagine he has a condition that could have acted like a timebomb and stopped his heart in adolescence or adulthood.

Jack has been diagnosed with Long QT Syndrome, a hereditary condition that resulted in the death of his aunt, Countess of Chester Hospital nurse Lisa Jane Brown, at just 27.

This means his condition will be monitored and he will receive treatment, when he gets older, that will let him live a long and active life.

His two-year-old brother, Adam, will have DNA tests for the condition soon.

The boys’ grandmother, Doreen Harley, of Halkyn View, Connah’s Quay, has dedicated herself to raising awareness of Sudden Adult Death Syndrome after daughter Lisa died and Long QT Syndrome was diagnosed in her husband and surviving daughter.

Mrs Harley said ‘Jack was diagnosed with Long QT Syndrome through DNA testing and Adam is waiting to be tested. At the moment Jack is not at risk of sudden death because he is too young, but he could have been when he got older. But when he reaches adolescence he will require treatment and will not be able to play competitive sport until then. The first treatment is beta-blockers, which usually work fine.

‘All symptoms are treatable and manageable, and early screening is the key. I don’t want people to think that if they are diagnosed their life is over – it’s not.’

Jack and Adam’s mum, Rachel Willn, 29, is due to undergo an operation at St George’s Hospital, London, to have an inplantable cardioverter defibrillator fitted into her Chest that will "kick-start" her heart if it stops.

Rachel, who is also a nurse at Walsgrave Hospital, Coventry, was found to have the condition when she was screened following Lisa’s death.

SCREENING CAN SAVE LIVES

The condition has also been diagnosed in Lisa and Rachel’s father Terry, and Mrs Harley believes that screening has possibly saved the life of her daughter and grandsons.

Mrs Harley is now the North Wales and Chester representative for Cardiac Risk in the Young (CRY) and is campaigning to bring a screening programme to the region in a bid to save the lives of other youngsters who may have the condition.

Mrs Harley added; ‘I am trying to get local businesses to donate sufficient money to get a CRY screening here. The cost is £6,666.

‘This would enable us to screen 30 people over a weekend with the proper equipment and staff. They will have a conversation with a cardiologist who will take their full medical history, have ECG tracing and an echogram. It is all non evasive, and if they are found to have any cardiac anomalies they will be offered treatment on the NHS.

‘Had Lisa (pictured) been offered ECG tracing it is quite possible that Long QT Syndrome may have been detected and she could still be alive today.’