Tragic heart families win MP's support

Devon families have welcomed a breakthrough lending support to their campaign for improved screening to identify people at risk of the rare Sudden Death Syndrome.

The issue is to be highlighted in the House of Commons today by an MP introducing a Private Member’s Bill.

Mother-of-three Donna Pyle, from Exeter, whose husband died of Sudden Death Syndrome when his heart stopped without warning when he was aged 32, is desperate to find if her two sons have inherited a strain of the heart condition which may have killed him.

She wants her husband’s heart tissue to be tested and her sons Jake, nine and Jamie, four, to be checked to establish whether they have long QT Syndrome, which is hereditary.  Gemma, her 13-year-old daughter by another partner, is not at risk of the condition.

Meanwhile, Kathy Moyle, 59, who has lost two daughters and a grandson to Sudden Death Syndrome, is awaiting the outcome of genetic tests on the rest of her family.  Both women are campaigning to raise greater awareness of the syndrome and improvements to screening.

The Private Member’s Bill, called the Cardiac Arrest in the Young Screening Bill, will be announced in the House of Commons by Stockton South MP Dari Taylor.

It will call for the Government to make clear that screening for heart problems should be made available to the families of people who are believed to have died from Sudden Death Syndrome.  The Bill also calls for screening to be made available to young people showing recognised signs and symptoms of the syndrome, which is an umbrella term for the many causes of sudden cardiac arrest.

The Bill could draw valuable attention to the issue, although it will stand little chance of becoming law unless it wins backing from the Government.  Mrs Moyle and Mrs Pyle are now writing to their MPs to call for them to support the proposal.  Mrs Pyle, 30, of Shakespeare Road, Wonford, said: “We badly need the Government to do something to help us.”

Mrs Moyle said: “The new Bill can help us raise awareness.  We must not let our loved ones’ deaths be in vain.”

Alison Cox, chief executive of the national charity CRY, Cardiac Risk in the Young, said: “Although screening for first-degree relatives is officially advised, the reality suggests not only that this advice is not given clearly enough, but also there is no chain of command ensuring that someone takes responsibility for this information to reach those affected.”

The Private Member’s Bill was the fifth to be pulled out of a hat in Parliament, giving it more chance of a hearing.  Normally, only the first six or seven names chosen in the ballot have a serious chance of getting their Bill through.