Families unite to tackle cruel killer
Every week eight young people across Britain die suddenly from undetected heart conditions.
Now in an effort to highlight this devastating loss the charity CRY – Cardiac Risk in the Young – is launching postcards across all areas of the country with photographs of eight young people from that area who have died in these tragic circumstances.
The Northern Ireland postcard includes pictures of two teenagers from Lisburn who died from undetected heart conditions.
Nicholas Collins from Balinderry was only 16 when he died in 1998 and Ciara Agnew from Derriaghy just 14 when she passed away in 2002.
The launch of the campaign on Sunday included speeches from Alison Cox, Founder and Chief Executive of CRY and John Lundy, whose son Aaron died aged 19. The group wants everyone to lobby their MP to find ways to prevent cardiac deaths among the young.
This month thousands of the postcards will be distributed by CRY supporters to people across Northern Ireland, who will ask them to send them onto their local MP.
A new card is being launched every month, portraying victims from 12 different regions across the UK.
CRY hope the postcards will maintain the momentum set earlier this year when the Department of Health agreed to add a new chapter to the National Service Framework on Coronary Heart Disease, dedicated to sudden death among young people.
The eight young people on the Northern Ireland postcard had no apparent symptoms or history of bad health. But their deaths could have been prevented if cardiac screening was more accessible.
Alison Cox said: “By showing just some of the faces behind the stories we read and hear about all too often we can help people begin to understand the heartbreak caused by this cruel killer and highlight the fact that it can happen to anyone, at anytime – usually without warning.
Yet these eight faces – representing the eight lives lost a week in the UK – show just a snapshot of the problem. We need to keep up the pressure and engage support from as many MPs as possible to make sure we can prevent other families from experiencing such tragic losses.”
Fit and healthy, yet heart infection claimed teenager Nicholas' life
Ballinderry schoolboy Nicholas Collins was just 16 years of age when he suffered from a fatal viral infection in 1998.
At the time knowledge of causes of heart diseases among young people was relatively scant. The keen, fit, basketball player spent seven weeks at the coronary care unit at the City Hospital, Belfast before passing away on November 24, 1998. Later it was revealed a viral infection caused his heart muscles to inflame and he suffered from a fatal haemorrhage.
The first signs Nicholas was unwell were in October 1998 when he returned home from college one Friday complaining of a sore throat and flu. He didn’t feel well enough to go to basketball practice in Lisburn.
Although he was prescribed antibiotics the doctor later had him admitted to the Lagan Valley Hospital. From there he was sent to the coronary care unit at the City Hospital where he was to spend the next seven weeks.
During his time there it was revealed that a viral infection had caused his heart muscles to inflame. His temperature and heart rate would fluctuate. Numerous tests were carried out but as time went by he got weaker and weaker.
At times he seemed to be improving and his mother even told the owner of a computer shop where he had applied for a part-time job that he could start work before Christmas. But Nicholas took a turn for the worse and suffered a fatal haemorrhage and despite having a blood transfusion passed away.
Brenda feels that her son may have died sooner, like other high profile more recent cases like Cormac McAnallen, if he had not been admitted to hospital when he was.
She knows doctors tried their best during his stay and that his hospital care was excellent. She feels that potentially life threatening heart conditions among the young can sometimes not be taken seriously enough.
"A sports teacher once told me that many young sporty men are very competitive and never want to complain that they are unwell,” she said.
“It is as though they find it hard to admit they do not feel well and just keep on going – not to let the side down.”
Brenda agreed to Nicholas’s picture being used on the CRY campaign postcards to encourage people to demand action by raising awareness among the general public as well as within the medical profession.
“Families are often told that this is a very rare event and so they think that their case is unique but over the years a lot of young people have died of these conditions and at least some of these deaths might have been prevented,” she said.
Charities are winners too!
Fundraisers from across Tendring put their running shoes on to come up with the case for charity in the 25th anniversary Flora London Marathon.
One Frinton family’s effort paid off beyond their wildest dreams. Sarah Perry, 32, died tragically after a long battle with anorexia. And since then her father, Chris Perry, and his wife Sally, of Harold Grove, Frinton, together with their four other children, have mounted a campaign to save others and raise money for the Eating Disorders Association charity.
On Sunday, brothers Tom, 34, Giles, 31, Luke, 28, and sister Charlotte. 30, were among the 35,000 runners. They had hoped to boost their funds from £16,000 to £20,000 but it now looks likely it will be nearer £22,000 thanks to all the support they have received. Tom completed the course in 4hrs 47mins while the others arrived together in 5hrs 29mins.
Chad Harrison, of Anchor Road, Clacton, ran his first marathon in six hours to raise money for Macmillan Cancer Relief. Mr Harrison, 33, joined a team of more than 650 runners of all ages as part of Team Macmillan.
He said: “The first few miles were no problem but when I got to Tower Bridge my shoulders gave way.”
Mr Harrison, who is a signalman for Network Rail, is now gathering sponsorship money in, which he expects to be about £3,000. It will also be matched up to £1,200 by his company. He is now hoping to run again next year to raise funds for a children’s charity.
Weeley farmer David Partridge completed his second and last marathon in 4hrs 57mins.
“I was on for a much better time but hit a wall at 23 miles,” he said. Mr Partridge hopes to raise about £2,000 for the Meningitis Trust.
Clacton policeman PC Trevor Abrahams was also collecting sponsorship after successfully completing the marathon. He is hoping to raise more than £1,000 for CRY (Cardiac Risk in the Young). Also running for CRY were Clacton Ladies Hockey Club members Julie Smith and Sarah Morton.
It was their first marathon and Julia came home in 5hrs 34mins while Sarah finished in just over six hours. They hope to collect about £3,000 for their charity.
“It was the most fantastic day – and if I can do it anyone can,” said Julia.
Runners take the marathon course to charitable victory
This time last year she couldn't run a mile. But on Sunday one
Watford woman showed just what you can do if you put your mind to it - by running an entire marathon.
Tessa Denham-Cookes, from Watford, ran the 26 miles in aid of Cardiac Risk in the Young (CRY).
She said: "It was really good, I loved every moment of it."
Tessa, who finished the race in five hours and six seconds, said she had wanted to support a smaller UK-based charity, and so chose CRY, which aims to raise awareness of Sudden Cardiac Death and Sudden Death Syndrome in young people.
Birdman home – behind rhino
A granddad in a bird costume completed the London Marathon – but he was disappointed to be overtaken by a rhino and an inflatable taxi in the final straight!
Dale Lyons completed his “31st” London Marathon in five hours 12 minutes, raising money along the way to help reintroduce the Great Bustard back to Britain.
The 68-year-old from Smithy Lane, in Church Lawford, said: “I don’t think I ate enough because I had nothing more to give at the end and the final indignity was at 24 miles out when someone dressed as a rhino overtook me. It got worse when an inflatable taxi went past me shortly after.”
Nevertheless, his efforts still raised £600 to help fund a breeding programme in Wiltshire for the Great Bustard – one of the world’s largest flying birds. Weighting at 40lb, and with a 7ft wingspan, the birds had been hunted to extinction in the UK by the mid-19th century.
Dale had already been pledged £450 before the race and was given a further £150 by generous people on the route.
He said: “It was the best supported marathon I have every been in. They came out in droves.
“Normally when you get to the Isle of Dogs you get some gaps in the crowds, but this year there weren’t any.”
It was Dale’s 31st London Marathon in 25 years, having run it twice and three times in previous years.
Other local runners included a nurse at Rugby’s St Cross Hospital who raised more than £2,000 for CRY (Cardiac Risk in the Young).
Sue Barnard, who completed it in four hours 54 minutes, said she had been “overwhelmed” at the response.
Stephen Jefferies, aged 30, from Ophelia Drive, Warwick, finished the race in four hours seven minutes, raising £400 for the British Heart Foundation, as a tribute to his father who had suffered two heart attacks.
Tessa's marathon effort helps charity
This time last year she couldn’t run a mile. But on Sunday one Watford woman showed just what you can do if you put your mind to it – by running an entire marathon.
Tessa Denham-Cookes from Watford, ran the 26 miles in aid of a little-known charity called Cardiac Risk in the Young (CRY).
She said: “It was really good, I loved every minute of it.”
Tessa, who finished the race in five hours and six seconds, said she had wanted to support a smaller UK-based c
harity, and therefore chose CRY, which aims to raise awareness of Sudden Cardiac Death and Sudden Death Syndrome in young people.
Despite the warm weather, Tessa said she found the course bearable.
She said: “I found the conditions good, I was praying it wouldn’t rain. I didn’t find it too difficult.
"There was a brilliant atmosphere. The crowds cheer you on when you start to flag. It really kept me going.”
Tessa, who was supported on the day by her dad, brother and fiancé, Bob, raised £1,400 for charity.
The 25-year-old said: “As soon as I crossed the finish line, I felt shattered but elated at the same time.
"It was my first marathon so I just followed the training programme.
“To be able to complete it all is such an achievement.
“Last year I watched it and I just thought ‘one day I would like to say I ran the marathon.’
"The first thing I said when I crossed the finish line was 'I want to do the next one'.”
Tessa, who works as an intelligence analyst for the Metropolitan Police, said she would recommend running the marathon to everyone.
She said: “I would encourage anyone to do it. It’s an amazing feeling.”
Marathon for tragic Richard
A Clacton policeman is to run in the London marathon in memory of a colleague’s ten-year-old son who died while he was playing. PC Trevor Abrahams is hoping to raise £1,250 for the charity CRY (Cardiac Risk in the Young) which works to raise awareness of Sudden Death Syndrome and campaigns for pro-active screening of youngsters. His colleague’s son, Richard Bethell, had been at the Go Bananas fun factory in Colchester as a treat last year when he collapsed after suffering a sudden cardiac death. His mum, Debbie who was with him, said: “He was a typical little action man.” It is Trevor’s first go at the Flora London Marathon on April 17. So far he has run 20 miles non-stop in three hours 18 minutes – six miles to go. So far he has raised £1,117 in sponsorship both on and off-line. If would like to make a donation he can be contacted on the internet on www.justgiving.com then find trevruns4cry or contact him at Clacton police station on 01255 221312.
Postcard plan that highlights heart tragedy
They were all young people full of promise and life. But they were struck down by a cruel, unseen killer.
The charity, Cardiac Risk in the Young, is today unveiling a poster-sized version of a thought-provoking postcard featuring eight young people from Yorkshire who died from previously undetected heart conditions.
The eight had no apparent symptoms or history of bad health. Yet all succumbed to Sudden Cardiac Death, an umbrella term for heart conditions which claim the lives of around 400 people aged under 35 a year.
Pauline Jolly, who helped organise the launch at Hull High School, in Anlaby, near Hull, with her husband Stephen, said screening would prevent many deaths.
Her 17-year-old son Anthony Lancaster, a promising student hoping to go to Cambridge, was found dead in his bed at his home in Swanland, near Hull, two-and-a-half years ago.
“There is still not enough recognition that things can happen in young people. It is still a bit ageist in reverse. I know of lots of families whose kids have had vague symptoms and it has been shrugged off, even recently.
“The ultimate aim is to have a similar system to the one in Italy and some of the States, which offer an ECG for all kids. It should be part and parcel of the general healthcare for children.”
Mrs Jolly, who has three other children, added: “It never leaves you. We will never be the same again. It just ruins your life – part of you dies at the same time.”
Kyla Hanson rushed to try to save the life of her 20-year-old sister Jodie after she fell ill at her flat in Market Weighton, East Yorkshire.
“She literally went to bed and 15 minutes later her boyfriend said she clenched up and then they knew something was wrong.” She hopes the launch will spread awareness, as she was not aware of the condition until reading about it in a magazine.
Chief Executive and founder of the charity Alison Cox said: “By showing just some of the faces behind the stories we can help people begin to understand the heartbreak caused by this cruel killer and highlight the fact that it can happen to anyone, at anytime – usually without warning.”
Hundreds of postcards will be distributed by CRY supporters to people in the North, urging them to send it back to their local MP.
It is hoped the cards will encourage MPs to add their support to the campaign and join the charity’s All Party Parliamentary Group.
A new card will be launched every month, portraying victims from 12 different regions across the UK. CRY hopes the postcards will keep up the pressure following the Department of Health’s agreement to add a new chapter to the National Service Framework on Coronary Heat Disease, dedicated to deaths among young people.
Ailments covered by the new advice include hypertrophic cardiomyopathy, the condition that claimed the life of Daniel Yorath, the son of Leeds United star Terry Yorath. His family launched a vigorous campaign to prevent similar tragedies.
The campaign is back by other famous faces from the world of sport, including CRY President Ian Botham OBE. Many victims are struck while taking part in competitive sport or physical activity.
The other people featured on the postcard are Vicky Leanne Johnson, 20, of Wakefield, Jamie Bucknell, 14, of Strensall, York, Dominic O’Loughlin, 11 of Halifax, David Harry, 15, of New Earswick, York, Mike Scott, 17, of Beadlam, York, and Joanne Russell, 32, of Ferrybridge, West Yorkshire.
Death inspired parents’ crusade
By Lucy Harvey
A bereaved couple have raised more than £10,000 in an effort to eradicate a mysterious heart condition which killed their young son.
Craig Johnson was 21 when he died unexpectedly on his way to Sheffield Hallam University – a victim of Sudden Adult Death Syndrome.
Since losing Craig in November 2002, his parents Jean and Ian, of Woodlaithe, Rotherham, have been fundraising to heighten awareness and fund research into the condition which claims as many as eight lives each week.
It is thought SADS has roots in cardiac arrythmia, an abnormal rhythm of the heart.
Sponsored walks and charity evenings have enabled them to give £2,500 to London University’s Heart Hospital, and £1,000 to the charity Cardiac Risk in the Young.
They have also paid almost £4,000 for two heart monitors at their GP surgery in Wickersley, and next week will present two more devices to Sheffield Hallam University, where Craig was a student.
The monitors pick up early signs of abnormalities and any young people who display signs of a heart condition will be sent to hospital for further checks.
Jean, 55, hopes the monitors will save lives and has vowed to continue fundraising.
She said: “We just want to save other people from what we have been through.”
Runner gears up for marathon challenge
When crime analyst Tessa Denham-Cookes took up running last year she could barely make it to the end of her street without getting out of breath.
Just a few months later, the 25-year-old from Watford is gearing up for the London Marathon.
She said: “I saw the marathon last year and remember thinking to myself ‘it would be nice to one day to say I’ve done it.’
“Then at the end of summer I decided I wanted to keep fit.
“So I started running and it just went from there.”
Tessa plans to compete in the event to raise money for Cardiac Risk in the Young (CRY).
She said: “I knew I wanted to support a small UK charity in preference to a larger international one, so I was really happy when I won a spot running with CRY.”
Tessa is now training in the gym several times a week and completing a long run each weekend.
She said: “I’ve never felt particularly fit. I’ve never been really sporty, but I can really see the difference.”
Her family, and workmates at her base in Collindale have encouraged and supported her and have helped Tessa with sponsorship.
She currently needs to raise £1,250.
Anyone wishing to sponsor Tessa, can log onto www.just-giving.com/TessaD-C
Centre staff raise memorial cash
Generous staff who worked at the Land Warfare Centre at Imber Road, Warminster, have helped raise more than £1,000 for charity. Staff from Defence Estates, Army Training Estates and Landmarc Support Services raised money for the Julian Wort Memorial Fund set up by charity CRY (Cardiac Risk in the Young). Julian Wort of Frome died, aged 28, of Sudden Death Syndrome, which is similar to cot death in babies. Since then his family has been raising money for CRY. Bob Morris, who works for Defence Estates, went to school with Julian, which is where the link to the charity was established. Mother Shirley Wort and her family and friends have already provided Frome Medical Practice with an ECG Machine and Frome’s Victoria Hospital with a defibrillator. They have raised £6,000 since March last year. Landmarc donated £1,000 and a further £300 was raised at coffee mornings during last year. The cheque was presented to Mrs Wort by representatives from the three companies and the Land Warfare Centre.
Rare illness almost cost Scott, 27, his life
A young man who survived a rare heart condition which can cause sudden death, told his terrifying story this week.
Twenty-seven-year-old Scott Fleming had no idea he had Wolfe-Parkinson-White Syndrome until he collapsed while playing football. As paramedics battled to save his life, Scott’s heart stopped beating on several occasions and he slipped into a coma. Doctors thought the design technician would be brain damaged and told his mother they didn’t think he would make it. But after having surgery and making a full recovery, Scott is now on a bid to raise awareness of WPW.
“After my operation I searched and have not found anyone else other than myself who was not diagnosed and went through what I did and survived.”
Scott, from Ladeside Drive in Blackburn, said he has always been fit and healthy and the only signs that something was wrong before he collapsed were palpitations when running.
“I’ve always been in good shape and had no idea I had this condition,” he said. “I am very lucky to have survived, although my confidence has taken a bit of a dent and I do wake up at night sometimes feeling scared.
I feel worse for my mum though, who had to sit by my bedside and be told by doctors that they didn’t think I would make it through.”
WPW is a very rare cause of sudden death in young people, and is caused by an extra electrical connection between the atria (upper chambers of the heart) and the ventricles (lower chambers of the heart.)
It is found in 1.5 people in every thousand and can only be detected by an electrocardiogram (ECG) scan, although a small number of patients experience palpitations, light-headedness or blackouts.
Scott was treated by an operation called a radio frequency catheter ablation at the Edinburgh Royal Infirmary, which saw surgeons passing a wire into the heart, through the large artery in his leg. The abnormal pathway which causes WPW is located by electrical stimulation and destroyed by passing a high current through it.
Scott says he should not have any more problems and has returned to full health since his ordeal on December 12. He said he is grateful to all the medical staff who treated him and to family and friends who have supported him.
The doctors have said that I am fit enough again to train to the level of an Olympic athlete, but I really want to raise awareness about this condition,” he said.
"The statistics are scary because eight young, healthy people are diagnosed every week in Britain with this.
“Also, 1.5 people from every thousand are thought to suffer from this and when you consider there are 15 to 20,000 people living in Bathgate alone, then that is a walking time bomb.”
Couple warns: watch out for heart problem
The parents of a two-year-old girl who died suddenly from a heart problem are trying to warn people about the condition.
Madeline Mulcahey was at home in Church Enstone with her parents Hugh, 42, and Jane, 44, when she started to feel unwell.
She was taken to hospital and treated for what doctors thought was asthma, but died a few hours later.
It was discovered later that she had died because muscles in her heart had thickened, a condition called Sudden Cardiac Death in the young.
Mr Mulcahey, a management consultant, said: “It was the worst thing that could happen to you, to lose your only child.
“It’s difficult to find words that aren’t hackneyed, but it was the most heartbreaking thing and it took a very long time to come to terms with it. She was an apparently fit and healthy young person, she fell ill very suddenly, and died hours later.”
“She was very grown up for her age, very mature, she just seemed a bit off colour and it looked a bit like an asthma attack. That was what she was treated for, but unfortunately that can be one of the early symptoms.”
After Madeleine’s death in December 2000, Mr and Mrs Mulcahey, who hope to have another child soon, learned of the condition which is thought to cause several hundred deaths a year.
It can affect young people with no apparent symptoms or history of bad health, and often strikes during physical activity.
Mr Mulcahey said: “We came across this charity which is raising awareness that many young people who die in unexplained circumstances have these heart problems. So we’re trying to raise awareness among the medical profession and the public that young people can have heart problems, it’s not just old people, and it’s very easy to screen them.”
The charity called Cardiac Risk in the Young (CRY), hold screenings at sports clubs, and detects a few abnormalities at every session. Routine screenings have been common in other European countries for decades, and problems are usually easy to treat.
CRY is launching a series of postcards featuring eight young people, including Madeleine, who died from undetected heart conditions.
It hopes supporters will send the cards to their MP’s to encourage them to support the campaign and join the charity’s all party parliamentary group, and already counts MP for Witney David Cameron as a supporter.
Girl, 16, dies in classroom
The teenager was sitting at her desk on her first day as an A-level student last September when she suddenly fell unconscious.
Staff at Cadbury Sixth Form College in Kings Norton, Birmingham, tried to revive her, but failed.
Her parents, John and Evelyn, were stunned. They had lost another daughter, Amanda, at eight weeks old to cot death in 1986. Then three years later, another child, Zoe, was stillborn.
Alison had hardly sat down before she collapsed in the college, so there was no question of horseplay or fooling around. Teachers thought she had a fainting fit and acted appropriately.
Agony as third daughter falls victim to mystery sudden death - Daily Mail - 4th March 2004
Girl's death remains a mystery - Birmingham Evening Mail - 4th March 2004
Pub patrons get on bikes
Pub customers are taking time out from the bar to get on their bikes for charity.
A team of 28 cyclists, headed by Michael Willis, landlord of the Tite Inn, at Chadlington, started out on Monday on a 120-mile ride through Oxfordshire to Hurley, in Hampshire, and back again.
They were joined for the send-off by Witney MP David Cameron, who though not riding this time, has previously joined the Chadlington bikers in charity fundraising rides.
They aim to raise more than £10,000 for three Oxfordshire charities, Oxfordshire Association for the Blind, Katharine House Hospice, and CRY – Cardiac Risk in the Young.
Mr Willis aid: “The roads around the village have seen teams of cyclists in training for the past few weeks, many of whom have not cycled more than a couple of miles in a day for ages.
“The bad news is that there are hills at the start and finish of the route each day, but we are all looking forward to the flat bits in the middle. It will be hard work, but it’s for three great charities.”
Charity golf tournament raises £2,000
A charity golf tournament held in memory of a Kings Langley man who died suddenly, raised £2,300 at the weekend.
The eighth annual tournament took place on Saturday to raise money for Cardiac Risk in the Young (CRY), in memory of Howard Jennings from Kings Langley.
Howard died suddenly, without warning, in 1996 from a genetic heart condition, leaving behind two young sons.
Keeley Ashley, Mr Jennings’s sister, organised the annual tournament.
She said: “I am really pleased that Saturday was such a success.
“My involvement with CRY has helped me to come to terms with the loss of my brother.
“I am keen to support CRY in order to raise awareness of these conditions in the hope that other young people will not die, and other families will not have to deal with the loss of a child at such a young age.”
The tournament, held at Little Hay Gold Complex in Hemel Hempstead, attracted 64 players in total.
The winner was David Anderson, second was Lee Scarborough and third David Chambers.
The ladies’ medal was won by Roxanne Masters, the longest drive was won by James Ross and nearest the pin by Terry Lee.
The charity CRY focuses heavily on raising awareness of heart conditions in young people.
It carries out research and offers counselling to bereaved families.