Tragic family living in fear

YOUNGSTER’S DEATH DRIVES TOP-LEVEL CALL FOR RELATIVES AT RISK TO BE SCREENED

A family living in fear of a potentially fatal condition is backing a screening campaign set to go before Parliament.

Wendy and Robert Hayes lost their son, Sam (11), from Sudden Death Syndrome (SDS) in May – and have been told that the condition can run in families.

Since his death, they have campaigned for standardised testing for families at risk and now MP Dari Taylor is putting a private member’s bill before Parliament tomorrow, calling for more screening tests for relatives.

Mrs Hayes, of Locko Farm, Pilsley, near Clay Cross, said “This is hanging over us and even though new testing procedures can’t bring Sam back, they could help his 13-year-old brother Jonathan and others.

Campaign group Cardiac Risk in the Young (CRY) recommended the Hayes family undergo tests to identify possible problems.  But its members feel many doctors fail to help or are ill-informed about symptoms, procedures, tests and referrals which would help ensure victims” relatives receive support.

Mrs Hayes waited six months to get scan results and son Jonathan underwent three types of tests which have not found any problems.

But the British Heart Foundation says relatives need to undergo five tests, including a scan, 24-hour monitoring and electrocardiograms to check pulse rates, to see if they too are at risk.

CRY chief executive Alison Cox said; “There is a terror for families so we are providing information for Dari Taylor so correct screening and tests may become automatically available.

“We need to spread awareness so doctors can refer patients to experts with the right testing and this should be worked into the NHS framework.”