Don’t let children die like their mother from Long QT Syndrome’
Nov 7 2009 by David Powell, Daily Post
A GRANDMOTHER fears her grandchildren may have inherited a dangerous heart condition that killed their mum.
Lady Sandra Armstrong lost her daughter Mandy Belger to a previously undiagnosed genetic trait called Long QT Syndrome in 2001.
Now she worries Mandy’s children Liam, 11, and Ella, eight, may develop symptoms.
Ella has suffered breathlessness and has six-monthly checks. Liam is on yearly check-ups.
Long QT is a hereditary electrical fault in the heart caused by rare disorders in the body’s sodium, potassium and calcium channels.
Sandra, of Victoria Drive, Llandudno Junction, said: “It’s a terrible thing. I hope against hope they will be OK.”
When Sandra’s daughter Mandy unexpectedly died, aged 21, in a friend’s flat in Caernarfon on April 23 2001, she contacted the charity Cardiac Risk in the Young (CRY).
The charity put her in touch with a London hospital to monitor her family.
Sandra said: “Ella has had breathlessness in the past. But the doctors don’t expect any more symptoms to show themselves until she is about 11. She is being monitored every six months.
“Liam is very sporty but is being monitored every 12 months. The condition doesn’t reach its head till puberty.
“But it doesn’t stop them leading perfectly normal lives.”
Sandra became a Lady when her present husband Godfrey inherited a family title. Now the couple are backing a campaign to raise awareness of the Long QT Syndrome condition.
CRY was founded in May 1995 to raise awareness of previously undiagnosed heart conditions.
The Armstrongs are helping to launch a major regional campaign across Wales to highlight how 12 young people a week in the UK die from sudden cardiac death.
A poster-sized version of an emotive new postcard, featuring the photos of 12 young people from Wales who lost their lives suddenly in this way, will be unveiled at the Cardiff Centre Novotel on Thursday.
CRY chief executive and founder Alison Cox MBE said: “We feel, as the recorded incidence of sudden cardiac death rises, that it is time to re-launch this powerful campaign to help emphasise the importance of screening and the fact that so many of these tragic cases affecting fit and healthy young people could have been prevented.
“80% of the young people who die from these tragedies have had no symptoms and it is only through screening that the condition can be identified.”
In 2001, North West Wales coroner Dewi Pritchard Jones was told a sudden shock, such as an alarm clock going off, could have triggered the condition which killed Mandy Belger.
She died from natural causes. He said the cause of her abnormal heart rhythm was unknown. Her mum Sandra believes she died after a sash window slammed shut at 2am.