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By Sadie Nicholas

Like millions of others, schoolboy Joe Humphries watched the TV in horror as Bolton Wanderers midfielder Fabrice Muamba collapsed after suffering a cardiac arrest during the now infamous game against Tottenham in March 2012.

But in a bitter twist of irony, less than seven months later Joe, 14, also suffered a cardiac arrest, dropping to the pavement while out running one evening near his home in the village of Rothley, Leicestershire. Sadly for Joe, there was no crowd of thousands and no heart specialist amongst them who could dash to his rescue.

Though passers-by fought hard to save Joe's life and paramedics arrived within minutes of the 999 call being made, Joe was pronounced dead later that night at Leicester Royal Infirmary.

It was 10 agonising weeks before Joe's parents, Angela and Steve, were given the news that their fit, healthy son had died from SADS – Sudden Arrhythmic Death Syndrome, the adult equivalent of cot death.

Shockingly SADS kills 12 people between the ages of 14 and 35 every week in the UK alone. Muamba narrowly escaped being one of those statistics but other sporting names – not to mention thousands of ordinary people – were not so fortunate.

In 1992 Daniel Yorath, son of former Welsh footballer Terry Yorath and brother of TV presenter Gabby Logan, died of an undiagnosed heart condition aged 15 while playing in the garden. Cameroon footballer Marc-Vivien Foe died on the pitch during an international match in France in 2003, as did Motherwell captain Phil O'Donnell during a game against Dundee United in 2007. And just three months ago Chloe Waddell, a teenage swimming star tipped for the Rio Olympics, died at home in Manchester after going into cardiac arrest.

Like Joe, they were extremely fit, making their deaths all the more unfathomable to their loved ones.
'When Joe died we descended into the blackest of black holes, our lives and the world around us now unrecognisable from what we knew before,' says Steve, 51, a former Leicester City goalkeeper, now sports marketing manager for the city council. 'We can't get our heads round it that something so catastrophic could happen to someone so healthy.'

This is a family on its knees with grief. Outside the detached home where Steve and Angela have lived since Joe was three a 'for sale' board is staked in the front garden.

'It's too painful to stay, I can see the lamppost where Joe collapsed from the upstairs windows,' says Angela, 48, a biomedical scientist at Leicester Royal Infirmary. Tragically one of her colleagues performed the post mortem on Joe's body.

The evening that Joe died – Thursday 4 October – began like any other.

'Joe came home from school, had his tea then went out at 6.30pm for a run with his childhood friend Meg with whom he was doing a charity run the following weekend,' says Angela, adding that at 6'3" Joe was a gentle giant who'd loved karate, swimming and running since he was six years old. 'I'd just got back from the supermarket when a neighbour knocked on the door and said something had happened. Steve ran down the road and as I stood at the front door I heard an ambulance – Steve missed it by minutes as it sped off with Joe in the back.

'When we got to the hospital they were still trying to work on Joe. We weren't allowed to see him until it was all over. This is a parent's worst nightmare but you never imagine that it will happen at your door.'

Treasured photos of Joe with his sister Lauren, 19, who is studying speech therapy at Newcastle University, take pride of place all over the house. On either end of the mantelpiece in the lounge is a framed picture: one of Joe, beaming, the other of Angela's father who died from cancer just 11 weeks before his beloved grandson.

One of the first to hear the news was former England rugby captain and coach, Martin Johnson CBE, who has known Steve for 20 years. They play football together every Friday night.

So shaken was he by the tragedy, Martin is now patron of the Joe Humphries Memorial Trust. Launched by Steve, Angela and many family friends in March, its purpose is to help reduce the incidence and fatality rate of SADS by raising awareness of the risk factors plus how lives can be saved if someone does collapse as Joe did.

'I'd been out cycling with a mate the day Joe died and ironically we'd been talking about a lad who'd had a cardiac arrest while playing football and also about Muamba,' says Martin, 43, who lives nearby with wife Kay and children Mollie, 10, and Henry, four. 'When I got home and received the news about Joe I was devastated for Steve and Angela.

'When Steve later told me how many young people die from SADS each week in the UK my reaction was to question why the hell we don't know more about it. People are told it's rare, but it's not that rare if it's happening to over 600 people a year is it?'

Dr Ffion Davies is Consultant in Emergency Medicine at University Hospitals of Leicester NHS Trust and has been campaigning for better awareness of SADS for a decade.

'The condition commonly affects 14 to 35 year olds and most SADS cases have a genetic origin,' she explains. 'Cases tend to come to light in the teens and early 20s, as the heart grows and matures.

'Frequently we hear about SADS happening during sport when the heart beats faster and harder, and may also suffer slightly low oxygen levels. If a person already has an abnormal heart structure or a genetic problem with the electrical conduction, exercise may trigger the heart to go into an abnormal rhythm and, worst case, a cardiac arrest.'

She says it's impossible to put a number on the percentage of deaths where no symptoms had presented, which was the case with Joe.

'As a doctor you can often uncover clues if you ask lots of careful, specific questions after the death when parents are given time to remember possible instances of warning symptoms,' she explains.

'Typical warning signs include a faint that's unusual – most faints happen if you're over-heated, over-full, stressed or stand up too quickly. Cardiac faints are more out of the blue.

'Other clues are chest pain, breathlessness or dizziness during or after exercise that are not down to being unfit, or if there's a family history of sudden, unexplained deaths under the age of 40. It's also a risk factor if a person suffers palpitations where their heart races, they have fluttering sensations, an irregular pulse rate or a thumping sensation in the chest.'

Screening in such cases involves a painless ECG (electrocardiogram) to get an electrical reading of the heart. An echocardiogram (ultrasound scan of the heart) can detect even more detail.

'If we can pick things up at the stage of warning symptoms, we can prevent SADS cases very successfully, often just with simple medication and advice,' Dr Davies continues.

An ECG while Joe was alive may well have picked up an arrhythmia, but he had never displayed any of the warning signs and appeared to be in rude health.

In the event that a person does collapse like Joe did, CPR (cardiopulmonary resuscitation) can be the difference between life and death. Now, Joe's distraught classmates at DeLisle College in Loughborough have filmed a simple instructional video with Martin Johnson on CPR and how to use a defibrillator – a device that delivers an electric shock to the heart to try and restart it. The footage is available on You Tube and Vimeo and will be rolled out to schools.

'If CPR is started immediately, done effectively and a defibrillator can be got to the victim within eight minutes, the majority of cases could be saved and without any brain damage,' says Dr Davies. 'We saw that with the excellent resuscitation that Fabrice Muamba received.'

The government has tasked ambulance services with providing more defibrillators in public places and Dr Davies is calling on private companies to install them in areas where there are large numbers of people or sport regularly takes place.

Martin is keen to emphasise that they don't want to frighten people off physical exercise.

'Far from it, we just need much greater awareness about SADS,' he says. 'When I played for England the staff around us were trained in CPR but as a player you don't think about it. But in the next 20 years I'm going to be standing on a lot of pitches watching kids play sport. You hope it will never happen, but if someone does go down with a cardiac arrest I want to have the knowledge and a bit of confidence to know what to do. If kids have learned about CPR and defibrillators at school and practiced the drill, it takes the shock out of the situation if it happens.'

Steve adds: 'The FA is going to put defibrillators into grass roots clubs so next we need to ensure that increasing numbers of people are trained to use them and administer CPR. It's not fair that one coach at a kids' football match or athletics track on a Sunday morning is responsible for first aid. We need parents, other spectators and kids to know what to do.

'We can't get Joe back but the Trust is his legacy and I won't rest until we've done everything in our power to try and prevent other families going through the hell that we'll take with us to our own graves.'