Grief-stricken mother who says ALL teens should have a £35 heart test Matthew Dewhirst, 17, died from an undiagnosed heart condition Affects 600 people under the age of 35 die every year Many could be saved by electro-cardiogram (ECG) during childhood By Caroline Scott Matthew Dewhirst was a much wanted and deeply loved son, who was conceived after nine gruelling IVF attempts. As his mother Sue, now 56, says: "We wanted a child so desperately, we'd have done anything. 'I kept thinking: "Next time it'll be our turn to be lucky." " Everyone called Matthew the gentle giant. He was 6ft 2in in and 18st, and when he enveloped me in one of his enormous hugs, I fitted under his armpit,' said Sue Dewhirst of her son Matthew, who died two years ago When she held Matthew in her arms for the first time, the endless hospital appointments were forgotten. None of it mattered, because I knew from then on that our lives were going to be all about Matthew. He grew up to be musically gifted and mad about sport, and Sue would spend hours driving him to football coaching, rugby or guitar lessons. "Our lives - mine and his dad Chris's - were really just about supporting Matthew to do whatever he wanted in life," she says. And we loved every single minute of it. It's been two years, four months, six days and a handful of hours since Matthew's sudden death from an undiagnosed heart condition during rugby training at his school in Shropshire. He was just 17. Sue still struggles to comprehend how the life of the super-fit son she loved so much could be extinguished in an instant. "Everyone called Matthew the gentle giant," she says. He was 6ft 2in and 18st, and when he enveloped me in one of his enormous hugs, I fitted under his armpit. The only shred of comfort Sue can find is in the belief that by telling Matthew's story, other young people with undiagnosed heart conditions will be saved. "Matthew had symptoms - recurrent fainting during exercise - for nine years before he died, but we were constantly told: "You have only to look at him to see there's nothing wrong with his heart." " Tomorrow, the charity Cardiac Risk in the Young (CRY) is unveiling a three-minute film to raise awareness of the risk of sudden cardiac death in young people, especially those involved in sports. Every week, 12 apparently fit young people under the age of 35 die of undiagnosed heart conditions - 600 every year. Many of them, CRY says, could be saved by specialist screening during childhood. This involves a simple electrocardiogram (ECG) that looks at the electrical activity of the heart. Sanjay Sharma, professor of inherited cardiovascular disease and sports cardiology at St George's Hospital in London, oversees CRY's screening programme. Our lives - mine and his dad Chris's - were really just about supporting Matthew to do whatever he wanted in life. And we loved every single minute of it,' said Sue "Taking part in sport doesn't cause young sudden cardiac death, but forcing the heart to work harder significantly increases the risk if there is an underlying and undiagnosed condition," he says. In 80 per cent of cases there are no prior symptoms. But when symptoms do present, they include recurrent chest pain (particularly when exercising), palpitations, breathlessness, dizziness and fainting. No one should ignore these symptoms, and if your GP is unconcerned, seek a second opinion with a specialist. Matthew played football competitively from the age of eight and that same year had the first of a series of fainting incidents. "The first time it happened was during a match," says Sue. He'd passed out and stopped breathing. Chris and I ran out on to the pitch. Chris performed CPR and Matthew came round quickly. We were assured by a paediatrician we saw in A&E that day it had been caused by a combination of migraine and stress, which he'd never suffered from before. Reluctantly, we accepted his opinion. Six weeks later, a private paediatrician examined Matthew, but he found nothing either. Eighteen months after that, Matthew collapsed on a cross- country run. Desperately worried, Sue, and Chris, 61, who works in the construction industry, took him to their GP: "He ran an ECG and assured us the problem was dehydration: Matthew wasn't drinking enough when he exercised." From that point, Sue went to every game Matthew played and didn't take her eyes off him for a second. "I never watched a match, I only ever watched Matthew," she says. In January 2011, just before his 16th birthday, he collapsed for the third time. According to Welsh Rugby Union rules - Matthew was playing an away match for his county - anyone who collapses during a game must be taken to hospital, so he was taken by ambulance from mid-Wales to Shrewsbury Hospital. The following day, a consultant cardiologist sent him for an ultrasound to check for structural heart faults and an ECG. Matthew grew up to be musically gifted and mad about sport He was sent home with a heart monitor that he wore for three days to check whether the rhythm of his heart was normal. A week later, he performed tests on a treadmill. "I was so relieved," says Sue. I thought we were going to get some answers. But we were told he was perfectly fit and that the problem was definitely dehydration. The day before Matthew died, on July 18, 2012, he came home complaining of chest pains. Sue, slightly exasperated, told him to drink more water. Ten hours later, she was in Sainsbury's car park after work when her phone rang. It was the school nurse to tell her that Matthew had collapsed. Sit him up and give him a fizzy drink ... Sue began. But without giving any detail, the nurse said: "I'm afraid it's much worse than that." She rushed to the school, but the moment she saw the air ambulance on the pitch, she knew. Sue and Chris were too numb with shock even to cry. "It was July, but I just remember feeling so, so cold," Sue says. All night long we shook with cold and shock. Professor Sharma says that though sudden cardiac death is rare, one in 300 people harbour a potentially fatal fault in the electrical system of their heart. These faults can occasionally result in very rapid electrical impulses. During these episodes the heart becomes stunned and stops contracting. The brain is then deprived of oxygen, causing the person to lose consciousness and collapse. The only method of restarting the heart is to deliver an external electrical shock to reset the electrical system. If this does not occur within ten minutes, the heart may never restart - which happened in Matthew's case. A post-mortem showed his heart appeared normal and his family was told the most likely cause of death was an electrical fault. Professor Sharma says that many paediatricians and even some cardiologists may not have had the training or experience in reading these very rare, abnormal ECG heart traces, which is why CRY's specialist team is so important. "These heart defects are either hereditary, which means they run in families, or congenital, which means the young person is born with something unique to them," he says. They can affect the structure of the heart or the electrical apparatus. But if you have ominous symptoms, more tests may be required. If a potentially life-threatening condition is detected, they may have to make lifestyle changes, have corrective surgery or take medication - and, in some cases, have an internal cardiac defibrillator fitted that shocks the heart into normal rhythm. Ollie Marsden, 21, had no symptoms before he died during rugby training in Totnes, Devon. One in 300 people harbour a potentially fatal fault in the electrical system of their heart On October 22, 2008, he left home at 7.40am for teacher training at a local primary school, followed by rugby practice that evening. His mother Linda was chopping vegetables for dinner when the phone rang. Ollie had collapsed. Linda, 59, the director of a building surveying practice, and her husband Kevin, also 59, a factory manager, drove the nine miles to the rugby ground. At the first set of traffic lights, Linda knew with a certainty she can't explain that the youngest of her three boys was dead. "The moment we got to the hospital, we were shown to the bereaved relatives" room. I just broke down," she says. Ollie lay on an elevated hospital bed, wires and tubes everywhere, and I could see he was lifeless. "As a mother of teenage boys you wait for the call to say your child has been involved in a car accident or has fallen off his bike," says Linda. You're not expecting to hear a fit young man has dropped down dead playing rugby. A post mortem revealed Ollie had died of arrhythmogenic right ventricular cardiomyopathy (ARVC) - essentially his heart failed to pick up the impulse that makes it beat. "Ollie had no symptoms," says Linda. After he left school, he'd wanted to join the RAF. But at 6ft, he was too tall. The irony is that if he had joined the Forces, he'd have had a full medical and the problem with his heart might have been found. Dr Stephen Cox, CRY's director of screening, believes all 14 to 35-year-olds should be screened. "Though this will not identify all those at risk and there can be false positives as well as false negatives," he says. In Italy, where screening is mandatory for all young people engaged in sports, the incidence of sudden cardiac death has been reduced by 90 per cent. Sue Dewhirst says: "If only I'd known about CRY I could have helped Matthew get specialist screening. But the first I heard about the screening programme was two days after he died. And Ollie's mum Linda says: "It could have been avoided by a test that takes ten minutes and costs £35." She thinks all teenagers should have the test. 'Time doesn't heal - you just get better at coping with the pain. For information about screening in your area, go to testmyheart.org. Spread awareness by sharing CRY's film via social media #testmyheart.