By Jane Elliott
Health reporter, BBC News
Adam Payne was just eight years old when he collapsed during a football match and died.
Adam was a keen football player
For months nobody was able to tell his family why it had happened, but doctors said they suspected epilepsy to be the cause of death.
Unhappy with this, Adam's father, Nick, started trawling the internet to try to find out anything that might help him explain his son's death.
He soon found the CRY (Cardiac Risk in the Young) website and case studies on it that mirrored Adam's death.
Researching the truth
He became convinced that Adam had been suffering from Long QT Syndrome - a disorder of the electrical system of the heart and one of a range of conditions that can cause unexplained, sudden death in a young person.
Six months after Adam's death the whole family was screened and Adam's brother Liam, now aged nine, and mother Monia were found to have Long QT Syndrome.
Both now receive treatment for the condition and are doing well.
Nick, from Kent, is angry that without his research, Adam's death might never have been properly explained, putting the rest of his family at risk.
And he welcomes the news that London's Royal Brompton Hospital has opened a new fast-track cardiac diagnosis laboratory, which will aim to ensure families like his will now get results within a fortnight.
"Everything had been perfectly normal the day Adam died," said Nick.
"When I left for work he was fine, but later that day I got the call to go to the hospital because he had collapsed. Then he died.
"The doctors did not know why he had died and a post-mortem had to be carried out to establish the cause of death.
"They were unable to establish any cause so the blunt fact is that some two weeks later we had to bury him, still not knowing why he had died."
Adam and his younger brother Liam pictured on holiday together
Five months later, in May 2004, Adam's inquest was held and although the coroner agreed with Nick that the cause could be Long QT Syndrome, he said there was no proof.
"Unfortunately the coroner needs to be 100% certain to say this on a death certificate, so my son's death certificate will always say he died from causes unknown," said Nick.
"I think in this day and age that it is wrong for this to happen."
At the same time Liam was due to go into hospital for a hernia operation and so his father demanded screening, worried that the strain of an anaesthetic might prove too much for his heart.
But his GP said there was a three-month wait for an electrocardiogram (ECG).
"I was alarmed. I said Liam could not have an anaesthetic without an ECG," said Nick.
"I phoned the surgeon who was due to carry out Liam's hernia operation and told him our fears. He said 'come to the hospital and I will give him an ECG'."
This confirmed Long QT Syndrome and because it was now known to be genetic, Nick and Monia were also screened - she tested positive.
Nick now wants to see greater awareness of heart conditions like Long QT Syndrome.
"A lot of families are given false information and told their children died from things such as epilepsy," he said.
"I think there has to be a lot more awareness of things like this at GP level - even innocent or seemingly innocent fainting attacks should be checked and they should be tested.
"Adam fainted about six months before the fatal attack while he was playing football and knocked himself out, but we thought he had tripped.
"There are cases every week where you hear of young people dying."
Dr Mary Sheppard, the consultant histopathologist at the Royal Brompton who is running the new fast-track pathology service, said that in the past, families like the Paynes have waited months for results because of the complexity of cases and demands of the pathology services.
Under the new system, complex cases can be referred to her.
For the past eight months her team have been running a pilot scheme and have seen two to three cases each week.
"But that is only the tip of the iceberg," she said.
"All over the country pathologists are handling other cases and handling them well. They only refer the difficult cases to me.
"The importance is getting a right diagnosis for family screening otherwise proper diagnosis can be missed, leading to other family deaths and that is why my work is so important."