Ellie is raising awareness of hidden heart conditions to prevent tragedies (Image: Ellie Downie)
Former Olympic gymnast Ellie Downie has backed a Daily Express campaign to register thousands more defibrillators as she battles to raise awareness of hidden heart conditions.
The 24-year-old’s world was rocked in May 2021 by the sudden death of her brother Josh, who collapsed while playing cricket.
He had an undiagnosed genetic condition which weakened his heart muscles, triggering a cardiac arrest.
Ellie, who retired from gymnastics last year after winning 12 world and European medals, is now a British Heart Foundation (BHF) ambassador.
She and her brother Alex will take part in the charity’s 54-mile London to Brighton Bike Ride on Sunday to raise funds.
READ MORE: Thousands of life-saving defibrillators registered after Express campaign
Josh died in 2021 aged 24 after collapsing while playing cricket (Image: Ellie Downie)
She said: “I think it will be quite an emotional day. Hopefully I’ll hold it together until the end.
“It’s a very different challenge for me. That’s how I channelled my grief, by going into gyms and distracting myself.
“When I’m on the bike some days and I don’t want to be sat there, I just focus on that mental discipline and get it done for Josh.”
The Daily Express Complete the Circuit crusade raises awareness of the UK’s national defibrillator network and the importance of registering devices.
The database has grown from 66,000 when our campaign began last May to 92,000, but health leaders want to hit at least 100,000.
Ellie said: “It’s super important. The Circuit is the main way that people calling 999 can be told where the closest working one is.
“It still mind-boggles me that you genuinely only have a matter of minutes before it can be too late.
“Those minutes matter so much. Getting every single defibrillator we can registered on The Circuit is the most important thing.”
Ellie and her family have been tested for the same genetic condition (Image: Ellie Downie)
Ellie, who competed with her sister Becky at the 2016 Rio games, was on her way home from Olympic trials in Wales when she was told Josh had died in Liverpool.
She recalled: “He was at cricket training and collapsed. They thought he was having a seizure so were advised not to use a defibrillator.
“Then the worst thing imaginable happened. It was all very much a blur and a complete shock.”
This year is particularly poignant, as Ellie’s birthday next month will see her become older than Josh was when he died.
She said: “It’s weird to think of him as not here. The grief almost gets a little worse because we talk about him in the past tense now and I’m getting to the point where I’m going to be older than him this summer.”
After an autopsy revealed Josh had arrhythmic cardiomyopathy, she and her family were tested.
None are yet affected but Ellie and her three siblings must undergo checks every two years.
“We have echocardiograms, MRI scans and a 24-hour ECG,” she said.
“I’m extremely grateful but obviously we just wish we had known a little bit sooner.”
Ellie now works as a PT and pilates instructor. Urging people to get checked if they have any symptoms, she added: “The only good thing that can come from Josh’s passing is that we have this platform to raise awareness.
“So many people have said to me since Josh passed, ‘I didn’t even know the difference between a heart attack and a cardiac arrest’, or the severity of it and how common it is in young people.”
Ellie’s appeal came as The Circuit’s supporters – the BHF, NHS England, St John Ambulance, Resuscitation Council UK and The Association of Ambulance Chief Executives – shared an open letter in the Express.
They wrote: “We’re calling on anyone who looks after a lifesaving defibrillator to register it today. It could be the difference between life and death.”
At least 12 young people aged under 35 die from an undiagnosed heart condition every week in the UK.
Anna McCaughley, head of events at the BHF said: “We’re so grateful to Ellie for taking on this year’s London to Brighton Bike Ride to commemorate her late brother.
“Losing a family member to a heart or circulatory condition is truly heartbreaking and in Josh’s case, a huge shock.
“We will all be behind Ellie on the day, supporting her and cheering her on as she makes her way along the iconic route.
You can support Ellie’s fundraising here.
Alan Thompson (left) was saved by a defibrillator in 2018 (Image: Alan Thompson)
‘Getting a defibrillator quickly can make a crucial difference’
Alan Thompson’s life was saved by a defibrillator when he suffered a cardiac arrest during a bike ride.
The grandfather-of-two had just started a 50-mile trip with his brother David when he collapsed.
Five strangers rushed to provide CPR and used a public access defibrillator to deliver an electric shock to his heart.
A last minute route change meant Alan, 67, was passing through the village of Smisby in Derbyshire when the incident happened.
He said: “I was incredibly fortunate. It happened in a small village and the people there knew where a defibrillator was, only 150m away.
“If we had been on a different route – we’re surrounded by country lanes – we might be have been out in the wilds.
“That’s where The Circuit comes in. It’s absolutely crucial that the ambulance service can direct callers to the nearest defib.”
Alan, from Swadlincote, was rushed to hospital and had two stents fitted to widen a narrowed artery.
The quick response of the heroes who sprang into action in June 2018 meant he lived to see the birth of his second grandchild.
He was back in the saddle raising money for the British Heart Foundation the following year, taking part in a 100-mile Ride London event.
Alan, who worked in the brewing industry for 42 years, urged people to learn CPR and take notice of where defibrillators are located on routes they regularly travel.
He added: “If you’re a guardian of a defib, please register it on The Circuit – it makes all the difference.
“If someone’s heart has stopped, getting that defibrillator there quickly is absolutely crucial.”
Your defib could be difference between life and death, say CIRCUIT LEADERS
Defibrillators can be the difference between life and death in the event of a cardiac arrest.
Along with CPR, they buy precious time until paramedics arrive and provide further treatment.
It’s vital that ambulances know where these lifesaving devices are. That’s why The Circuit – the national defibrillator network – was launched in 2021.
It provides a national picture of where defibrillators are across the UK, so that ambulance services can direct bystanders to the nearest registered defibrillator if they see somebody having an out-of-hospital cardiac arrest.
Since The Circuit launched, there have been over 92,000 defibrillators registered on the network. This fantastic achievement has created a nationwide picture of defibrillators for ambulance services, but we know there are still other devices out there essentially ‘lost’ outside the system.
We’re now working as hard as we can to reach 100,000 registrations on the network.
Tragically, there are more than 30,000 out-of-hospital cardiac arrests every year in the UK, but fewer than one in 10 people survive.
This is partly because public access defibrillators are used in less than 11 percent of out-of-hospital cardiac arrests.
The Circuit’s partner organisations are encouraging anyone with a defibrillator to register it immediately so that the device location is known to the ambulance services.
We’re also calling on schools to register their defibrillators, as there are currently at least 12,000 in schools yet to be registered.
We’ve come so far, and we’d like to say a heartfelt thank you to the incredible efforts of the public in registering defibrillators onto the network. But we still have further to go together.
With over 92,000 registrations, we’re so close to the milestone of 100,000 defibrillators on The Circuit.
We’re calling on anyone who looks after a lifesaving defibrillator to register it today.
It could be the difference between life and death for someone in your local community.
– Open letter signed by the British Heart Foundation, NHS England, St John Ambulance, Resuscitation Council UK and The Association of Ambulance Chief Executives