“Debbie’s tireless dedication to screening young hearts in memory of Aaron is a powerful testament to her strength and commitment to saving young lives. Through 100 screening events, she has transformed her unimaginable loss into a legacy of hope, ensuring that other families may be spared the same heartache. Her achievement stands as a reminder that one person’s determination can create a lasting impact on an entire community.”
These words from Dr Steven Cox echo the sentiments of all those involved with CRY (as well as the thousands of young people across the North West of England who’ve had their hearts tested) as an incredible milestone in the prevention of young sudden cardiac death was reached this weekend, thanks to the efforts of Debbie Dixon, from Tarporley, Cheshire and the fund she set up in memory of her son Aaron, who died 10 years ago in September 2014, aged just 23.
Debbie recalls that on the day Aaron died; “Everything seemed normal. He had been out the night before with his sister Hollie, now 32, and their friends, and was just up in his bedroom.”
Later, Debbie sent her husband Gary upstairs to tell Aaron that his dinner was ready, Hearing Gary scream, Debbie rushed upstairs to find him doing CPR. Paramedics arrived, but it was too late.
A coroner later explained that Aaron, a keen footballer and gym-goer, had an undetected genetic heart defect called arrhythmogenic right ventricular cardiomyopathy (ARVC) that can cause cardiac arrest, if undetected and untreated.
Since the tragedy of Aaron’s sudden death, Debbie has devoted her time and endless energy to raising money to fund heart testing for young people, provided by CRY’s UK-wide screening team, to detect these often hidden conditions.
And, in true milestone moment, on Sunday 6th October, Debbie held her 100th day of cardiac screening, in conjunction with CRY – bringing the total number of young people screened through the Aaron Dixon Memorial Fund to 8728. To date, funds raised by Debbie and her community of supporters has led to 346 young people being identified with heart anomalies which have required referrals for further investigations and potentially lifesaving treatments.
Debbie says; “I raise money to fund heart screenings in memory of my precious son, Aaron, because I never want another family to endure the heartache we’ve experienced, and I believe that early detection through heart screenings can save lives.
“Every screening we have held so far has resulted in someone, if not more than one person, being referred due to perceived heart abnormalities. Furthermore, every week in the UK, 12 young people aged 35 and under die due to an undiagnosed heart condition.
“By supporting CRY I hope to prevent other families from the same suffering and honour my son’s memory in a meaningful way.”
One of the most powerful examples of the importance and impact of preventative screening is 27-year-old Charlotte Carney-Hughes who was identified with a serious heart condition when she attended one of Debbie’s screening days held at The Grange School in Hartford (the same venue as the 100th screening!) in 2016. The chain of investigations that followed led to Charlotte being diagnosed with the condition, Restrictive Cardiomyopathy and eventually having to undergo a lifesaving heart transplant operation. Bound by this shared experience, they’ve remained firm friends with Charlotte accompanying Debbie to the Pride of Manchester ceremony, where she received a Special Recognition Award.
Charlotte says; “I went on to have a flawless recovery. I’m nearly 7 years post-transplant now and I’ve learned that I’m so lucky to still be here. So many things went right for me and so many things had to align for me to receive my transplant… and the beginning of it all is Debbie Dixon.”
In addition to her incredible community fundraising, Debbie also sought to successfully secure funding from The JD Foundation who became proud partners of the Aaron Dixon Memorial Fund in 2016. And, as such, the current Chair of the JD Foundation, Traci Corrie has added her voice to the wave of congratulations for Debbie’s hard work and determination.
“Since 2016, the Aaron Dixon Memorial Fund has been a valued charity partner. Debbie has devoted her life to saving young lives in his memory of her only son, Aaron. Through her work with Cardiac Risk in the Young, Debbie is not only changing lives but saving them as well.
“With support from The JD Foundation, a remarkable 3,594 young adults have been screened, and 123 have been referred for further care. Debbie’s 100th Screening Day on October 6th is such a significant milestone that we are honoured to sponsor.”
Amongst the 1000s of screenings appointments supported through Aaron’s fund, over 800 elite athletes have had their hearts tested, via the English Institute of Sport and more recently, a number of dancers at the English National Ballet!
And whilst Debbie has raised £710,000 to date – with her eyes firmly set on hitting the million-pound mark one day soon! – awareness raising and campaigning for change to UK screening policy has also been at the heart of everything she does, recently meeting up with newly elected MP for Chester South & Eddisbury Aphra Brandreth.
Ms. Brandreth comments; “Debbie has been an inspiration, her fundraising and energy has made a difference to so many families. Well done for everything you have done to raise awareness of Cardiac Risk in the Young and huge congratulations on achieving 100 screenings.”
But Debbie says; “Anyone who knows me knows I don’t do this for awards. I just want all young people to be screened. I want to keep Aaron’s memory alive, and I don’t want anyone else to lose a child like we have. I retired early to dedicate my life to this, but I’ve also got my family and Aaron’s large circle of friends who are behind me every step of the way and who are all instrumental in the fundraising for Aaron’s Memorial Fund. They are my link to my precious son, and I couldn’t do this without them all.”
CRY now screens around 27,000 young people (aged 14-35) every year across the UK – and since the charity was first launched in 1995 has over 305,000 young hearts. One in every 300 people of those tested by CRY will be identified with a potentially life- threatening condition.
In 80% of cases of young sudden death, there will have been no warning signs or symptoms which is why CRY believes proactive and preventative screening is so vitally important.
Most of CRY’s screenings take place in community settings (e.g. schools, colleges, church halls and sports clubs) across the UK. Two Saturdays in every month, around 100 young people (aged 14-35) are also screened for free at CRY’s National Screening Centre, now based in Leatherhead, Surrey.
Many of the young people who are identified through community screenings with potential abnormalities will be referred back to CRY’s Consultant Cardiologist, Professor Sanjay Sharma and his expert team at St George’s Hospital, London for further investigations or to a specialist centre for Inherited Cardiac Conditions (ICC) in their local areas.
The vast majority of CRY’s screenings are funded by families (such as Debbie’s) who have been affected by a young sudden cardiac death, so there is no charge to the individual when CRY’s mobile cardiac screening service comes to a local venue.
CRY uses a very simple, effective and non-invasive way of diagnosing most cardiac abnormalities. It is a quick, painless and affordable procedure called an electrocardiogram (ECG), which is reviewed by a specially trained medic. If a young person is found to have an abnormality, CRY will also swiftly refer them for Echocardiogram screen (ultrasound) and ongoing, more in-depth investigations, as necessary.
