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20th May 2024

‘One single gene took our Ben’ – Public appeal launched to help fund new equipment that detects hidden heart conditions

Sophie Collins

Mater Hospital

The Mater Hospital Foundation is calling on the public to help raise vital funds for its new heart screening equipment

The genetic testing equipment would allow them to screen three times the number of patients for hidden heart conditions.

For patients who have lost a direct family member to Sudden Arrhythmic Death Syndrome (SADS) this advanced genetic-screening equipment will help diagnose serious inherited heart conditions. 

By identifying conditions hidden in our genes early, this technology allows for potentially life-threatening diseases to be actively managed — saving countless lives.

One family who knows the devastating reality of hidden cardiac conditions are the Murrays, who lost their beloved son Ben suddenly and unexpectedly at just thirteen years of age. 

Ben’s mum Alma says: “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.”

Through genetic screening, it was discovered that Ben had a serious, hidden heart condition called ‘CPVT’. 

Alma says: “One single gene — the RYR2 gene — that’s what took our Ben.”

Following the devastating loss of Ben, the Murray family were screened at the Mater Hospital’s Family Heart Screening clinic, where it was discovered that both Alma and Ben’s brother Alfie also carried this same gene.

Alma says: “Now we know we have this gene, we can protect ourselves from it. Alfie’s been fitted with a heart monitor. 

“The Mater keeps us safe. I know what it’s done for my family, and with your help, so many more families like ours can be saved.”

Mary Moorhead, Chief Executive of the Mater Hospital Foundation says: “By donating to this campaign, you will be directly helping protect hearts by bringing this equipment to the Mater, where it can screen three times as many people.”

She added: “Everything we do in the Mater Hospital Foundation is made possible entirely through the kindness and generosity of our supporters. 

“Your kindness today has the power to help change the fate of entire families. Thank you for your compassion, and for giving if you can.”

You can support the Mater Hospital Foundation’s Heart-Screening Appeal by making a donation online at www.materfoundation.ie/donate or by calling the Fundraising team on 01 830 3482.

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