Shirley Wort has raised thousands of pounds since her son collapsed and died suddenly of a rare heart condition.

But she is still working hard to raise awareness about a disease that claims up to eight young lives a week in the UK.

She is now seeking to raise £3,000 for a defibrillator for Frome Victoria Hospital.

Mrs Wort’s son Julian, was a fit, healthy builder but in March 2000 at the age of 28, he died unexpectedly in his sleep at his home.

Medical tests revealed that he had hypertrophic obstructive cardiomyopathy, a disease that causes thickening of the heart muscle.

If Mrs Wort had known about Sudden Death Syndrome she could have insisted on an electrocardiogram test that might have saved Julian’s life.

“He did have symptoms six months prior but it was put down to asthma,” Said Mrs Wort, of Westwood Drive, Frome.

“Unfortunately that wasn’t the case.  I just don’t want any other family to go through what we’ve been through.”

For the past four years Mrs Wort has campaigned to make screening more widely available for young people.  The at-risk age is between 14 and 35.  Sporty youngsters are more vulnerable because of the extra strain placed on their hearts.

“After the loss of Julian we became involved in a national charity, Cardiac Risk in the Young,” she said.

“The Julian Wort Memorial Fund is held with CRY and due to the success of local fundraising initiatives we were delighted to purchase an electrocardiograph machine in Julian’s memory, which is used for the benefit of patients in the Frome Medical Practice.”

Mrs Wort and her family raised £10,000 when they launched the memorial fund and are now seeking to raise £3,000 for a defibrillator for the Frome Victoria Hospital.

Defibrillators are used in emergencies to shock the heart back to a normal rhythm when patients have collapsed.

Mrs Wort said: “If it will only save one life I will be happy.”