Ben was your usual cheeky 13-year-old. He loved to read, he loved his friends, and he loved school. He was loving life…
If you’ve ever lost someone you love, you know that even saying the word ‘was’ when you talk about them feels like a dagger in your heart.
Ben died on New Year’s Eve. The family – His Mum – Alma, Dad – and brother Alfie… were after stuffing their faces with a Chinese takeaway. Ben had gone off to play his football game on the X-box. About an hour later, Alma found him unresponsive in the playroom.
She immediately started CPR… and ambulance came…Ben was rushed to hospital. But they couldn’t save him. He’d had a cardiac arrest. It just took him.
You’re in a state of absolute shock. You can’t believe it… How could a young, healthy, sporty kind like Ben be gone? Just like that.
There were no answers that night as to why Ben died… Not until the family were referred to the Mater… Through gene screening at the Family Heart Screening Clinic, the Mater found out that Ben had “CPVT” — it’s a long-complicated abbreviation for a serious heart condition.
The Family Heart Screening Clinic exists thanks to the incredible generosity of Mater Hospital Foundation supporters like you… and your donations continue to help provide this vital heart and gene testing service – and the staff required to carry it out.
CPVT such a sneaky condition, most people have no symptoms at all.
One single gene — the RYR2 gene — That’s what took Ben.
And without the Mater, the family might never have known that Mum, Alma and brother, Alfie carry the gene too.
You can imagine how painful that felt for Alma… Not for the fact that she had the condition too, but for the fact that she’d passed it down to her boys without even knowing.
You’ve lost your first born, then you find out your other child has the same condition. The fear of losing Alfie was overwhelming. But knowing they had this gene, they can protect themselves from it.
Alfie’s been fitted with a heart monitor. Keeping an eye on his heart 24 hours and day with all data reports fed back to the Mater. He can live a totally, active normal life being well monitored and on the right medication.
In Alma’s words…
“Without the Family Heart Screening Clinic – supported by the incredible generosity of Mater Hospital Foundation donors – I don’t know where we’d be.
They brought us answers on what happened to our beautiful Ben… and they continue every year to keep monitoring Alfie and myself and keep us safe… they are simply amazing.”
Alma