A Cheshire mother saves the lives of countless young people with a revolutionary cardiac screening program, following the tragic loss of her son from a genetic heart condition.
It goes without saying that no parent should lose a child, and when such a loss is sudden, it can bring devastation that’s impossible to contend with. This was certainly the case for Tarporley-based Debbie Dixon, whose son Aaron died suddenly from an undiagnosed genetic heart defect in 2011, at the tender age of just 23.
Having been admitted to hospital on two occasions and discharged with a diagnosis of dehydration without an ECG having been conducted, Aaron’s death was an unexpected shock for his family, as was the cause – Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), which was disclosed two months after his passing.
As is understandable under such circumstances, Debbie and her family plummeted into darkness: “For 18 months, I wasn’t in a great place. Looking for support, I contacted the charity Cardiac Risk in the Young (CRY) and discovered the astonishing statistic that 12 young people lose their lives from cardiac-related issues every week, with 80 per cent having had no prior symptoms. Even as a mother of two,
I had no idea, and I realised that unless such a tragedy touches an individual personally, most people probably wouldn’t be aware,” said Debbie. Armed with this newfound knowledge, Debbie decided to take action, initially contemplating raising money to pay for defibrillators, before realising this was already a popular area for fundraising efforts.
“CRY suggested a subsidised screening program as an alternative,” explained Debbie, “whereby 100 young people per day could attend specially organised events to be screened for cardiac abnormalities. Each event would cost £6,800, which seemed like a lot of money, but it was all about saving the lives of our young people, so I was determined.”
Eager to make an impact, Debbie set up Aaron’s Memorial Fund through CRY to back the first screening event, and with Aaron’s friends, family and a keen network of supporters rallying around, the funds were eventually in place:
“We held our first screening weekend in 2014, and from that event, 11 young people were referred for further investigation. It was a shocking statistic, but it spurred me on to keep going,” said Debbie, who to date has now raised in excess of £740,000 for the screening program, through sponsored events such as marathons, tea parties and skydives.
“We were lucky in 2016 to be chosen as one of the 10 charities for the JD Sports Foundation, which donates money from sales of the shop’s famous duffle bags to fund four days of screening each year. Their values align with ours in that we aim to help young people in sports-related environments.”
Rugby clubs, football teams, athletes and other sports organisations regularly attend Debbie’s screening days and while some of the larger clubs can afford to fund it themselves, grassroots teams often rely on the subsidised program.
“In 11 years, we have screened 9,478 young people and 378 have been referred with abnormalities” said Debbie. “Most have received treatment through annual screenings, medications, pacemakers or defibrillators, and one young lady has even had a heart transplant. These young people are all living proof that screening saves lives, which helps to raise the profile of what we do.”
Also assisting in bringing cardiac screening for young people to the forefront of people’s minds was the high-profile, on-pitch heart attack of Danish footballer Christian Eriksen at the 2020 Euros: “I vividly remember watching the event unfold, and we received more than 60,000 screening requests that weekend because of it,” recalled Debbie.
“We’ve currently got 105,000 young people on our waiting list who require screening, which frightens me, because I wonder how we’ll raise enough money to get through them all.”
One avenue of support has come in the form of the OrthTeam Centre at the private Spire Manchester Hospital in Didsbury, who have generously offered their facility for screening events. Following a trial session, Debbie hopes to make the venue a North West screening hub and plans to invite local businesses to an open evening to explain how they can support her efforts in saving young people’s lives.
“It would be amazing to have the backing of local companies. I knew early on that I had to do something in Aaron’s memory to survive the journey of child loss. The screening program helps save the lives of young people and prevents other families from going through what we’ve been through.”
To make a donation in support of Debbie’s cardiac screening program for young people, please visit Aaron’s Memorial Fund at www.c-r-y.org.uk/aaron-dixon. To find out more about screening, please visit www.c-r-y.org.uk/screening.
By Mary Lee-Slade
