Anne Jolly, 56, who, after the sudden and unexplained death of her teenage son, set up a charity to prevent other families suffering a similar terrible loss. . .
Twelve years on, Anne Jolly can still remember every word of the phone call that shattered her world for ever. She was at work, and her youngest son Philip was on the line, panicked and frightened.
‘It’s Ashley. I can’t wake him. He won’t wake up, Mum.’
‘I knew immediately that Ashley was dead,’ says Anne, then a secretary working part-time hours to fit around her family. ‘I don’t why — call it a mother’s instinct.
‘I raced home in a blind panic and found Ashley lying on his bed, looking peaceful as if he was asleep. But he was clearly dead and probably had been for some hours.
‘The paramedics tried to revive him, but stopped quite quickly. They said they were sorry but there was nothing more they could do.’
Ashley, a sports-mad, fit 16-year-old was gone for ever. Because his death was unexplained, the police were called, the room cordoned off and no one allowed in.
Finally, his body was taken away for a post-mortem, leaving behind him a utterly distraught and shell-shocked father John, mother Anne and brother Philip, then 14.
‘The pain is like a physical one which takes your breath away,’ says Anne. ‘You care for your children, nurture them, protect them and keep them safe from all harm — only to find that you can’t actually keep them safe from death.
‘We sat there in a daze. I was desperately going through what he had eaten the day before, what he had done. How could my son die without warning, without even giving us a chance to save him?’
It was a question that was to haunt Anne for months to come.
‘The post-mortem results stated he had died of an asthma attack,’ says Anne, from Brentwood, Essex.
‘But I just couldn’t accept that. Ashley had never had an asthma attack in his life, his bedclothes were undisturbed and neither his brother, who slept in the same room, nor I had heard a thing. Surely he would have struggled for breath or called out for help.’
The need to find out the truth of what happened became, in Anne’s own words, an obsession.
‘I went on the internet and started to write letters and emails to experts in a variety of fields. I sent a copy of Ashley’s post-mortem to professors in all the London hospitals and eventually one wrote back to say they felt Ashley’s death most fitted the symptoms of a cardiac abnormality.’
Cardiac arrhythmic abnormalities claim the lives of eight young people each week, usually without warning.
They come under a variety of names — Long QT Syndrome, Catecholaminergic Polyventricular Tachycardia and Wolff-Parkinson-White Syndrome, to name but a few — but essentially all describe the disruption of the electrical signals which keep the heart pumping.
If the pattern is disrupted enough, the heart stops beating, within seconds the brain is oxygen-starved and, like a light flicking off, the person is dead.
Anne says: ‘I researched the condition, speaking to charities in America and Australia. Gradually, I realised this was most likely to be the cause of Ashley’s death.
‘Until then, I’d felt so lonely, as if we were the only family this had happened to. It was a relief to know we were not on our own. The shock was not only did nobody seem to know much about the condition, but nobody seemed to want to know.’
But, as Anne was to discover to her horror, it wasn’t just pathologists who were ignorant about it. GPs, coroners and even some cardiologists were unaware of the condition and, worse still, of the early warning signs which, if read correctly, could save someone’s life.
Symptoms include dizziness, blackouts, unusual chest pain on exertion, feeling faint and seizures. But, as Anne says: ‘Not everyone will have symptoms. Ashley didn’t that we can recall.’
However, if there are symptoms and the sufferer is referred to a cardiologist who specialises in arrhythmia, there are drugs that can help. In some cases, a tiny implantable defibrillator can be fitted which restarts the heart when it stops.
‘Unfortunately, these symptoms taken separately are vague and can easily be written off as something else,’ says Anne.
‘A few years after Ashley died I met one boy who’d been diagnosed with epilepsy, and even though his medication wasn’t working and he was still passing out, his doctor persisted in this diagnosis.
‘It wasn’t until his family came across one of our leaflets that he was properly diagnosed and fitted with an internal defibrillator. Without that, he could well have died and his death been attributed to epilepsy.
‘Family history is a critical area of diagnosis. Often, when you look at the family tree of victims, you’ll see they have had several members who died prematurely and suddenly — maybe in their sleep, or an unexplained car crash, or by drowning when they were a strong swimmer.
‘I realised there was a huge need both to make the public aware of the symptoms of cardiac arrhythmia, but also to get the medical profession up to speed as well. Experts around the world were doing great things, but not exchanging developments that could save lives.’
So a year after Ashley’s death, Anne and John launched the organisation Sudden Arrhythmic Death Syndrome (SADS) from their own home, supported by the British Heart Foundation and backed by key cardiologists.
A year later the group received charitable status, and in 2002 held its first conference at the Royal College of Physicians which was attended by more than 60 medical experts from all over the world — the first time there’d been such a gathering on the syndrome. SADS has held a conference every year since.
From the start, Anne was sure awareness and education was the key to cutting deaths.
‘One of the first things we did was to send symptom leaflets to every GP’s surgery in the UK, both to enlighten the GPs and to inform the public,’ she says.
‘We contacted cardiology units, and often they pass their newly diagnosed patients onto us for support.’
Anne is now a trained bereavement counsellor, and a heartbreaking but necessary part of her work is talking to traumatised parents.
‘I know exactly what they’re going through,’ she says.
Several times a year the charity runs bereavement retreats where people can talk to others in the same situation.
‘We share memories, trauma, light candles and hold memorial services.’
Fundraising takes up a great deal of Anne’s time, and she’s proud there are now more than 100 heart monitors and heart event recorders in GPs’ surgeries across the UK, all funded by SADS, and the same number of external defibrillators in sports clubs, leisure centres and schools.
‘A target is to have an external defibrillator in every school in the UK,’ she says. ‘They are so simple to use, and if you can keep someone’s heart going until the paramedics arrive, you could save their life.’
In just over ten years Anne and SADS have helped thousands of families, raised hundreds of thousands of pounds to buy essential diagnostic and life-saving equipment and ensured that millions of people have now heard of sudden arrhythmic death syndrome.
‘Before Anne, there was zero awareness of this condition,’ says Dr Andrew Grace, senior cardiologist at Papworth Heart Hospital.
‘Today, thanks to her work, awareness of sudden adult death is high both among the public and medical profession. Now families have somewhere to turn, not only for cohesive, reliable information, but also to receive counselling. Out of her loss she’s achieved an enormous amount.’
Despite being about to become a grandmother, Anne has no intention of slowing down. ‘I just keep ploughing on,’ she says. ‘I do it for Ashley and for all the other young people who, like him, never got the chance to grow into adulthood.
‘SADS doesn’t give you a chance to say goodbye. I want to spare anyone else suffering that.’
SADS UK, The Ashley Jolly Trust, is at www.sadsuk.org.