When Rugby legend Robert Jones joined a charity aimed at stopping the deaths of young people with hidden heart defects, little did he think one of his own relatives would fall victim.
The former British Lion and Wales scrum-half became a patron of Cardiac Risk in the Young after a young man in his home village of Trebanos suddenly collapsed and died.
Christiaan Smith was just 24 years old and his autopsy unveiled a previously undiagnosed condition called myocarditis.
Robert joined other supporters to raise money in events including the Three Peaks Challenge in 2002.
But he did not think then that just 12 months later his cousin, Alun Jones, would also suddenly drop dead with a hidden heart defect, also known as Sudden Death Syndrome.
The death of Alun, who was 33, and lived in Alltwen, shattered his entire family.
Robert said he had grown up with Alun and his two brothers and his family were very close to Allun’s parents, Hilary and Huw.
“We have a caravan in Aberaeron and I was there when I heard the news about Alun’s death,” said Robert.
“It wasn’t just myself and my wife and family who were devastated to hear, but the whole caravan site.
“Alun often used to come up to the caravan. He was a really nice guy.
“His parents are devastated and they will probably never be the same again.
“Hilary is a real hands-on Welsh mam and it has hit her for six.
“We are keeping close to them because they need support now than ever.”
Robert said it was an ironic coincidence that the condition killed one of his own family.
“It shows more than ever the need for awareness,” he said.
“Every week between four and eight young people die from undetected heart defects.
“We need to raise money for more monitoring equipment and continue campaigning for better screening.
“If Alun had been screened his condition could have been picked up and treated and he could have still been alive today,” said Robert.
The rugby star was speaking at Clydach Hospital, where he was handing over £12,500 worth of cardiac equipment to Swansea NHS Trust on behalf of CRY.
With him was Paulette Smith, the mother of Christiaan, who died in 1999. She is the local CRY counsellor and speaks to parents across the UK who are going through a similar loss.
“Our lives were changed irrevocably by Christian’s death,” she said.
“You never get over the sudden loss of your child.
“There are so many emotions, but you learn to develop a public face and a private one. Christmas and new year has been hard, because you are a year further away from your child.”
But Paulette said that campaigning to raise the profile of the condition has helped her cope.
“If I can work towards something which stops other parents having to go through this it will be worth it.” she said.
Christiaan’s condition, myocarditis, is the same illness which killed 15-year old Daniel Yorath, the son of former Wales and Swansea City manager Terry Yorath in 1992.
