A family that has battled against a life threatening disease hope their extraordinary story will help save the lives of others.

Doreen Harley, Cardiac Risk in the Young (CRY) Divisional representative for North Wales and Chester, believes raising awareness of heart problems in the young will help prevent Sudden Adult deaths.

Doreen has dedicated her life to the cause after she and her husband Terry lost their 27-year-old daughter Lisa Jane Browne to Long QT Syndrome.

Lisa, a nurse at the Countess of Chester Hospital, died on January 10 1998, although no cause of death could be found at the time.

Doreen said: “My son-in-law received a phone call at 7.15am from the hospital where our daughter worked to ask if Lisa had overslept.  My son-in-law went back upstairs to wake Lisa, but could not rouse her, feel a pulse, or find any signs of breathing.”

Six months prior to her death, Lisa visited her GP complaining of light-headedness, chest pains and palpitations, and as a result was diagnosed as suffering from stress and depression.

Lisa had been exceptionally tired for the last three years of her life, although Doreen says no medical person would take her seriously or offer any investigations as to the cause.

“The anti-depressants she was prescribed are on the list of banned drugs for anyone suffering from Long QT Syndrome.  Had Lisa been offered an ECG tracing it is quite possible that Long QT Syndrome may have been detected and if treated with beta-blockers she could still be alive today.”

In March 1999, after reading articles provided by Cardiac Risk in the Young on Sudden Adult Death, Doreen and Terry contacted Professor William McKenna at St George’s Hospital in London to see if either they, or their surviving daughter Rachel, could be screened for possible Long QT Syndrome.

Later that year it was discovered that Terry also had the disease, and although he has never suffered any symptoms, was promptly put on beta-blockers.  Unfortunately this reduced his heart rate to 36 beats per minute and the beta-blockers were stopped immediately.  Should he develop symptoms in the future he will be put back on them and will have a pacemaker fitted.

The discovery of the hereditary disease in Terry has saved the life of Doreen’s surviving daughter.

Rachel Louise Willn, 29, who works as a nurse in Coventry, was also screened and found to have the disease.  She is now taking treatment and her two children will be monitored until their early teens in case any symptoms develop.

Doreen has dedicated her future to working with Cardiac Risk in the Young, which offers help, support and counselling to families where there has been a sudden cardiac death of an apparently fit and healthy young person.

“ We don’t want to alarm people but alert them if they have sudden death in the family then it is very important for that family to be screened immediately.  I hope what has happened to us prompts others to do the same.

“It is often difficult to consider that someone young who is apparently fit and healthy may be at risk.  There is a simple way to diagnose most of the cardiac abnormalities which can lead to sudden death and that is by having a quick, painless and affordable ECG test.”