Debbie Dixon - why I'm fighting for increased cardiac screening for young people

PUBLISHED: 09:23 26 June 2019 | UPDATED: 09:23 26 June 2019

Cheshire Hero; Deborah Dixon at Clotton, Tarporley

Cheshire Hero; Deborah Dixon at Clotton, Tarporley

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Instead of being consumed by the grief of losing her son, Debbie Dixon, from Clotton near Tarporley has found the strength to save others

Cheshire Hero; Deborah Dixon at Clotton, TarporleyCheshire Hero; Deborah Dixon at Clotton, Tarporley

The night before he died on September 4th 2011, our son Aaron, then 23, had been out with his sister Hollie and their friends. They were so close and our house was always full of their mates. Aaron was someone everyone loved. So smiley and joyful. He had great friends, a lovely girlfriend and a bright future as a graphic designer. And then all that was taken away.

My husband Gary found him. We'd been calling him for dinner and when he didn't respond, Gary went to get him. When the neighbours heard Gary's scream, they ran from their house into ours because they knew something terrible must have happened. Apparently I called an ambulance but I couldn't even remember our address. And it was too late anyway.

It took two months for the coroner to tell us that Aaron had died from a genetic heart defect called ARVC. It was almost unbelievable. He was so fit and healthy. He played football, went to the gym. But of course it's only with hindsight you start putting pieces of the jigsaw together. In the four years before he died Aaron had collapsed and been hospitalised on two separate occasions. Both had followed nights out. Both times doctors had put it down to dehydration. They were wrong.

If only they had tested his heart, it could have all been so different.

It was the coroner who told us about the charity CRY (Cardiac Risk in the Young) but it was more than a year before I made contact. I talked to other mothers in the same position and began to discover more about the lack of cardiac screening in young people. So we set up a trust in Aaron's name to fund private screening days. We open them to anyone aged 14-35 to come along and have an ECG to check everything is okay. A two-day screening weekend costs us £10k.

We started back in 2013 - Gary, a family friend and Aaron's mates did a sky dive in Aaron's memory and raised more than £20k. Since then we've raised more than £250,000 in his name. Two years ago I gave up my job to focus on fundraising full time.

That has meant so far I've been able to screen 2748 young people. Most of those are fine but out of that number, 96 have been sent for further testing. Usually I don't know any more than that but I know we've saved at least one life. In 2017 we screened a young woman from Northwich called Charlotte Carney who'd been suffering from exhaustion and breathlessness. She was referred and diagnosed with Restrictive Cardiomyopathy. Her heart was failing and she could essentially die at any moment. Within five months she'd undergone a heart transplant and, I'm proud to say, is in good health now.

That's partly why I do this: because something good has to come out of something so devastating. Because 12 young people lose their lives to sudden, unexplained heart failure every week. But mostly, if I'm honest, it's to make sure the world doesn't forget my boy. There is a future for us - we have a beautiful grandson, Otis Aaron, who is eight months old and a daughter we adore. But I also have a son. And for as long as I can, I will keep his name alive.

For more, visit c-r-y.org.uk.

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