Mater Hospital says it could screen three times as many people with new technology A young family has spoken about the devastating loss of their son as part of a campaign to fund genetic-screening equipment that could have saved his life. Ben Murray died of Sudden Arrhythmic Death Syndrome (SADS) when he was just 13 years old. After his death, tests found that he had the hidden heart condition CPVT (Catecholaminergic polymorphic ventricular tachycardia).
CPVT is an inherited cardiac condition that causes sudden arrhythmias in otherwise healthy children. This often happens at times of high adrenaline levels such as exercise or moments of high emotion. Ben’s condition was caused by a mutation in the inherited RYR2 gene.
“One single gene — the RYR2 gene — that’s what took our Ben,” his mother Alma said. “Ben died on New Year’s Eve. He had gone off to play his football game on the X-box.
About an hour later, I found him unresponsive in the playroom. Ben was rushed to hospital, but they couldn’t save him. We found out then he’d had a cardiac arrest.
It just took him.” Since Ben’s death, the rest of the Murray family underwent genetic screening at the family heart screening clinic in Dublin’s Mater Hospital. It was then that they discovered that both Alma and Ben’s brother Alfie also carried the RYR2 gene.
The Murray family shared their story yesterday as the Mater Hospital Foundation launched an appeal for donations for new genetic-testing equipment. Th.