Connah’s Quay mother Doreen Harley knows all too well of the shock, pain and grief of losing a loved one to an illness which not even the victim knew existed.

Her 27-year-old daughter Lisa Jane Browne, a paediatric nurse at the Countess of Chester Hospital, was enjoying life to the full, planning a family and doing a job she loved.  But on January 10, 1998, she was pronounced dead.

Now Doreen is determined to use her tragic death to help save other lives in her role as CRY’s (Cardiac Risk in the Young) divisional representative for North Wales, with duties in Chester.

‘We didn’t have a clue how ill Lisa was,’ said Doreen. The dedicated RGN and RSCN was suffering from Long QT syndrome, one of 11 causes of sudden cardiac death in the young.

About six months prior to her sudden death she visited her GP with light headedness, chest pains and palpitations. She was diagnosed as being under stress and was prescribed anti-depressants.

‘It is believed that she died from the shock of her alarm clock going off at 6 am,’ said Doreen who explained how noises while a person is asleep can cause sudden death.

‘My son-in-law got a call from the hospital asking why she hadn’t showed up for work. He went upstairs to wake our daughter but could not find any signs of her breathing.’

The anti-depressants Lisa was taking are on the list of banned drugs for anyone suffering from her condition.

Had she been offered an ECG, her condition may have been detected and she might still be alive today.

But Doreen is not beset with bitterness and regret, but is adamant that her young daughter’s death has not been in van.

‘It’s as though may be one of my daughters had to die to save my other daughter and grandchildren,’ she said.

In March this year Doreen’s surviving daughter Rachel Willn, 29, and her child Jack, five, were also diagnosed as having the life-threatening condition. Her son Adam, two, is awaiting testing.

Her husband Terry is under the care of the Electrophysiologist at Broadgreen Hospital in Liverpool after also being told he is suffering from the hereditary syndrome.

But with treatment such as beta-blockers sufferers can lead a relatively normal life. The key is early detection.

‘Those who have symptoms are the lucky ones. There are things that can be done if it’s detected early.’

Doreen, therefore, has good reason for being at the centre of CRY’s two-year fundraising campaign to bring screening facilities to North Wales.

‘I learned about CRY from a magazine about a year after Lisa’s death,’ she said. ‘It’s only when something like this has happened to your family that you really start to take notice.

‘I kept picking up the paper and reading about more deaths which brought back all sorts of memories.’

Cricketing legend Ian Botham, OBE, is patron of the charity which is striving to raise awareness of the syndrome which puts sporty youngsters with an underlying cardiac abnormality at most risk.

‘We’re trying to raise £6,666 to bring CRY screening to a focal point in North Wales. This would enable the screening of 37 teenagers or young adults over one weekend.

‘The fundraising drive has just started and we have just two years to raise the money as it’s a ring-fenced fund. If we don’t do it in that time it will be spent on other equipment such as ECG monitors.

‘We’re hoping local organisations will come forward with donations. It’s so important we have this facility.’

Alyn and Deeside MP Mark Tami has thrown his weight behind the campaign and Doreen believes his influence will definitely work in the charity’s favour.

‘We are not out to alarm but to alert particularly athletic teenagers who suffer from symptoms and continue to put strain on their hearts.

‘If we can save lives then it’s all been worth it.’

Doreen has brought hope to at least eight other grieving families in the last 18 months by using her first-hand experience to help other grieving parents come to terms with the loss of a child.

As a CRY counsellor she also advises on the importance of other family members being checked out to prevent the syndrome claiming even more lives.

‘CRY supports and counsels bereaved families. I’m currently on a residential course down in Surrey. Once I’ve qualified I plan to start a counselling diploma at Deeside College.’