It is known that there are at least 400 cases of Sudden Adult Death Syndrome (SADS) in the UK every year.  This has led to more and more grieving relatives to turn to CRY, set up a decade ago amid increasing awareness of the condition and its causes. 

Margaret Banks, of Ashworth Street, Fenton, is one of many people who have been helped by Mrs Harley and the group’s bereavement counsellors. 

Mrs Banks' grandson Ryan Hulme died suddenly in April last year as he stood up to answer his mobile phone.  The 19-year-old Michelin worker’s mother, Alison Copeland, had died in similar circumstances 20 years previously.  It was later acknowledged that Ryan had a condition linked to Long QT Syndrome and 12 members of Mrs Banks’ family had to be screened to see if they were at risk. 

Mrs Banks said: “Ryan was just playing on his computer, the phone rang and that was it.”

The circumstances were chillingly similar to the death of Ryan’s mother.  In October 1984, Alison had been enjoying her first few weeks as a new mum.  She was looking forward to buying a new house with husband Gordon and the couple were staying with her parents until the right property came along.  But one morning Alison, who was 20, went back to bed after tending to Ryan.  She died minutes later.  After Alison’s death, her parents Terry and Margaret became legal guardians to Ryan. 

“When Alison died it was devastating for everybody involved,” said Mrs Banks.  “As we cared for Ryan we never thought the same thing would happen again to him.  He called me ‘mum’ from a young age and it just carried on.  He called his real mother ‘mummy Alison’ and coped with the fact that she wasn’t here very well.” 

After Ryan’s death, members of Mrs Bank’s family were screened to see if there were any genetic heart abnormalities.  Mrs Banks was shocked to discover that she was found to have a rare condition, Brugada Syndrome, closely linked to Long QT. 

It was first identified in the late 1980’s and is a rare condition in the West.  It appears to be considerably more common among young men in South East Asia.  It is very similar to Long QT Syndrome, although it affects the heart in a slightly different way and is also responsible for causing SADS. 

Mrs Banks has been helped in her efforts to learn more about her grandson and daughter’s deaths by CRY, through Doreen Harley, who has helped her face up to her grief.  Mrs Banks said: “CRY was amazing.  We were left on our own after Ryan’s death.  My own GP was great, but no one seems to know very much about this condition.  Without CRY I don’t know what I would have done.” 

CRY chief executive and founder Alison Cox said: “When I first started CRY in 1995 I was told there’s no point setting up a charity like it, because there was only one or two cases a year. 

“Ten years ago it was thought to be very rare, but it is now recognised that there are 400 sudden deaths in Britain every year.  That’s about eight every week.” 

A pathologist who helps CRY but who asked to remain anonymous spoke about the difficulties and frustrations of dealing with SADS deaths.  He said: “These deaths are a difficult diagnostic challenge for us. 

“Sometimes the parents wish to arrange even more complex investigations so that no stone is left unturned.  There is a craving to seek an explanation, however remote. 

“It is hard to attend an inquest and basically admit to failure.  Families long to be told that their loved one died of a specific illness and not an unspecified or ill-defined entity such as sudden death syndrome, even though it amounts to a natural cause of death.”   

Find out more about Brugada Syndrome