Danny Jones' widow's 'legacy' heart scanning drive

By Nicola Bryan
BBC News

Image source, Family picture
Image caption, The Keighley Cougars player died from an undiagnosed heart condition

The widow of a rugby league player who died after suffering a cardiac arrest is working with a Welsh heart screening charity to "save lives" in his memory.

Wales international Danny Jones, 29, died after collapsing during a match in May 2015.

Lizzie Jones is working with Welsh Hearts, which aims to screen 18 to 35 year-olds for undiagnosed conditions.

Since 2016, it has tested 900 young people - 300 of which have been referred for further investigation.

A post mortem examination showed Keighley Cougars player Jones died of cardiomyopathy, an inherited condition leading to the thickening of the cardiac muscles, which could have been diagnosed by an echocardiogram screening.

Mrs Jones said while nothing she could do would bring the father-of-two back, she hoped to create a legacy in his memory by helping others.

"I've been making such a difference in Danny's memory and that's the best thing you can do," she said. "Not everyone gets that opportunity.

"People are alive now because of Danny. I've had so many messages of thanks from people who went to the doctors to get checked after hearing about what happened to him."

She added she was determined he would not be "just another number" and wanted to "make a change in his memory".

"I never once thought about his heart when he ran out on the pitch. Now it is my life," she said.

Image source, Family photo
Image caption, Danny Jones died in 2015 when his twins were five months old

Welsh Hearts runs testing sessions across Wales, which cost £6,000 to hold, averaging about £50 per person screened.

Testing is carried out by cardiologists, who assess the likelihood of a heart abnormality that could indicate an elevated risk of sudden cardiac death.

If further investigations are deemed necessary, a referral is made for tests to establish a diagnosis.

Dr Justin Taylor, consultant cardiologist at Prince Charles hospital in Merthyr Tydfil and a trustee for the charity, said: "We'd like to see an increased detection for potentially preventable heart problems which would mean fewer people would die unexpectedly or they'd get treatment sooner to prevent problems in the future."

In February, research published by British Heart Foundation Cymru estimated 30,000 people in Wales are carrying a faulty gene that puts them at high risk of developing coronary heart disease or sudden death.

The charity said each week in the UK, about 12 seemingly healthy people aged 35 or under died of sudden cardiac events due to undiagnosed conditions.

Mrs Jones had been told her twins, who were five months old when her husband died, may have inherited their father's heart condition.

Media caption, Tributes pour in for Rugby League player Danny Jones

She said: "My children may have this gene inherited from their dad. There's a 50% chance.

"They haven't been tested genetically. I want them to be of an age where they can make that decision as well.

"No child under the age of 13 has ever been affected so there's no real benefit to knowing. I don't want to ruin their little lives."

Welsh Hearts' next screening session will be held at the Principality Stadium in Cardiff on Saturday, 13 May.

However, the Welsh Government highlighted that the advisory UK National Screening Committee does not recommend this type of whole population screening test.

"We support a range of whole population screening programmes," a Welsh Government spokesman said.

"For these programmes the NHS offers a complete service, not just a test - making sure people understand why they have been offered screening, what the outcomes might be, if there are any downsides and what their options are for each outcome."

Image source, Welsh Hearts
Image caption, Screenings costs Welsh Hearts about £50 per patient

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