Stepping out for Kallista
Thomas and Debbie Heavey's family holiday to Paris turned to tragedy when their eight-month-old daughter Kallista was suddenly struck down by a heart condition.
But just nine months after losing their beloved daughter, the couple are preparing for a charity walk and hope the money they raise will help prevent another family from going through the same nightmare.
They will be taking part in a sponsored walk over eight bridges in central London, organised by the charity Cardiac Risk in the Young (CRY).
The charity says that every week in Britain, eight apparently healthy youngsters like Kallista die from undiagnosed heart conditions.
The statistic will be symbolised by the eight bridges and eight kilometres the walkers have to cover during the event on July 15.
Like many parents of children affected by heart conditions, Thomas and Debbie were unaware there was anything wrong with their daughter before that day in September.
But hours after the first symptoms became apparent, the heart disease myocarditis had claimed Kallista's life. Thomas, aged 42, of Wynbank Close, Miles Green, said: "It was totally unexpected. Her breathing just became a lot shallower. We had the doctor out, and took her to hospital. We thought it was an allergy.
"She seemed to be getting better but on the second day she suffered heart failure.
"I'm still not entirely sure what it is - it's some sort of bug that attaches itself to the back of a virus and attacks the heart.
"It was such a massive infection there was nothing they could do at the hospital."
Thomas and Debbie will be joined on the walk by their other children, Athena, aged eight, and four-year-old Xander.
"Team Heavey", as they call themselves, will also consist of various other members of their extended family and friends, and they are aiming to raise hundreds of pounds for CRY.
Thomas added: "Originally it was only going to be my wife, our two other kids and myself doing the walk, but there's been so much interest.
"The money that's raised will help buy equipment and fund research into screening, so doctors are better able to identify children who are most at risk. If they can treat heart conditions early, it can make a big difference.
"That's why we're doing it, why we want to raise as much money for CRY as we can. If we can prevent another family going through what we've been through, then that would be fantastic."
Wolstanton teenager Nathan Butler died suddenly from a rare heart condition last February at the age of 16, and since then his family have helped raise more than £7,000 for CRY.
Nathan's mum Angela said: "CRY has just spent £200,000 on research into conditions like Nathan's, and the money we raised has helped to pay for that.
"It is a fantastic organisation. It's not only the screening work they do, but also the bereavement support they offer to families. We've had a lot of help from them."
The Heavey family have set up a website to make it easier for people to sponsor them. To support Team Heavey, follow the link at
Leave your tributes to Kallisata at
Cars star in charity trip
A car club in Crewe is set for a Mini adventure as it prepares for a charity drive. Crewe's Missiles, a club which shares an appreciation for Minis, has organised the trip in support of CRY, a charity that raises awareness of cardiac risk in the young. Crewe's Missiles member Joanne Woolrich, of Frank Webb Avenue, said: "The club has been established for eight months now. Usually we do these runs just for fun, but this is the first time we have all really got together to support a charity. "I suggested CRY as I'm a close friend of Karen Reece who lost her son Daniel Boughey to SADS - Sudden Arrhythmic Death Syndrome. The charity has helped her and now we want to support them. We hope she will see us set off. "On this occasion it is only members from our club who are invited to join in. Already we have had a fantastic response, with 25 Minis definitely signed up. The minis will set off on Sunday, March 25 from Marshfield Bank Community Centre. The route has yet to be finalised, but Barmouth will be the first destination via Bala, with another three stops for re-grouping. Each driver involved will e asked to donate a minimum £5, and will receive a plaque to place on the front of their car stating the purpose of the run. Joanne added: "We hope to organise more charity runs in the future. We are dedicated to supporting CRY for the next 12 months and even hope to set up a CRY stall at any car shows we attend. "We would like to thank Mini Mine and Smithsons Motors Factory in Stoke for their support and Arthur Gerrard who has made a donation towards the cost of the run. "Together they have made up plaques, so now any contribution will go directly6 the charities. Finally, I would like to thank all the club members who have helped to organise this charity run.
Club's fundraiser for cardiac group
Unexplained sudden death in the young is frequently recorded as sue to natural causes but experts now believe that many of these deaths can be attributed to Sudden Death Syndrome from inherited forms of heart muscle disorders and irregular heart beats.
It is often difficult to consider that someone who is apparently young and fit may be at risk but the tragic deaths of such sports stars as Cormac McAnallen (Tyrone GAA) and John McCall (Irish U19 rugby) shocked everyone. Sporting youngsters stress their hearts the most, but if they have an underlying cardiac abnormality they are more likely to be at risk. Sport in itself does not lead to cardiac arrest but it can act as a trigger for a young person to die suddenly by exacerbating the undetected condition.
Cardiac screening can eliminate many of these deaths and to this aim Cardiac Risk in the Young (CRY) has set up a special clinic in Northern Ireland where they will screen any young and physically active individual between the ages of 14 - 35 with a couple of very simple tests which can diagnose most underlying cardiac pathologies.
CRY suggest screening is requested via a GP if there has been any young sudden deaths in the family or if the young person is suffering from exercise related chest pain, breathlessness, palpitations, dizziness or fainting. The tests are painless and non-intrusive and cost about £35.
Tickets for gig tribute go well
Music fans are set to travel from far and wide to attend a concert in Malvern being staged by a Worcestershire band in tribute to a great friend of theirs who died after a cardiac malfunction.
Fifty-eight-year-old Keith Jones of the band Rare Breed said they had sold nearly 200 tickets in less than a month for the event in memory of 38-year-old singer-songwriter and multi-instrumentalist Adrian Coffey, who lived in Malvern Link.
Mr Coffey was at a friend's home in August when he felt a pain in his chest and was taken to Worcestershire Royal Hospital, where he died. We reported earlier this month how Rare Breed are now putting on a concert in memory of him at Malvern Youth Centre in Albert Road North on Saturday, December 2.
Mr Jones, who lives near Malvern, said the band were overwhelmed with the response, and knew of people who known Adrian through his work as a scientist with Malvern-based science and technology organisation QinetiQ who were travelling from as far as Plymouth, Kent, Yorkshire and Oxfordshire for the concert.
He said: "I think the great response has just been because of how Adrian was and that he was such a good guy.
"We're doing gigs all the time but this one will be a bit special because of that link and we're really looking forward to it - the vibes are definitely right for it."
Mr Jones formed Rare Breed last year with Tony May of Cotheridge. He met Mr Coffey at a folk club and played with him for 13 years, appearing alongside him in the group the Road North with renowned folk musician Vikki Clayton.
Rare Breed's Malvern concert is being held in aid of the charity Cardiac Risk in the Young. They hope to raise more than £2,500.
A limited number of tickets, priced £10, are available by calling Keith Jones on 01886 821 931 or 07974 703 581 or from Aquarius in Malvern town centre.
Cry for all our kids
The family of Armagh school-boy John McCall - who died a result of a heart defect while playing rugby in 2004 - are advising all parents to have their children screened.
Ian McCall this week told the Gazette that a new clinic - must launched at the University of Ulster in Jordanstown - could prevent other families from having to suffer in the same way they have.
Disbelief followed the death of 18-year-old John, who collapsed during Ireland's opening World Cup fixture against New Zealand at Durban in March 2004. It was just over a week earlier that John led the Royal School Armagh to Schools' Cup victory.
The happiness of Ian and Carolyn McCall in seeing their son write a new page in the royal's rugby history books turned to heartache in South Africa. The community was stunned, a family was devastated.
But the McCalls decided that John's death to cardiomyopathy - a disease of the heart muscle which very often affects young people - should help others.
Joining with those who have similarly suffered, this saw the information of a local CRY (Cardiac Risk in the Young) group and, last Wednesday, Northern Ireland's first independently-funded heart screening clinic was launched.
"What we are about is raising awareness of sudden cardiac death and trying to raise funds for the use of raising awareness," explained Mr McCall.
"We would try and help and support people who have been through a similar situation to ourselves.
"Our mission statement is 'through information and communication to raise and increase knowledge about life-threatening cardiac conditions that affect young people. Our aim is to make screening accessible to young people across Northern Ireland."
"That's what we are about as a group. CRY was set up some time ago across the water, but having a Northern Ireland group now means that any funds raised in Northern Ireland will be used in Northern Ireland".
CRY has now established the clinic at Jordanstown; while the group has provided the equipment, the University of Ulster provides the facilities and staff. It will operate once a m month - possibly extended, as and when the need arises.
And it could offer a lifeline to many young people who do not yet k now they have a heart complaint. Treatment is possible if complaints are diagnosed.
Said Mr McCall: "The results of the screening are e-mailed to London, where CRY have a resident Cardiologist, Dr Sanjay Sharma, who will read them and advise on a course of action if need be. This is up and running now. If you went to get screened today, you would find it difficult on the National Health, where you would just join the waiting list.
"If you were to go private, if could cost you up to £350. Sometimes that can be off-putting, and you will have to wait your turn. We can offer subsidised screening for £35 per person.
"According to Dr Sharma, there are over 2,000 - and probably more - young people walking around with a possible heart complaint. the sad thing is that the heart, because it is a major organ, if there is a problem it can result in fatalities. So you don't have room to wait".
Indeed, waiting is simply not an option, according to Mr McCall, who feels that all young people in the 12 to 20 age bracket - regardless of fitness and lifestyle - should be tested.
Shortly after John died, the coach of the Portora Royal School rugby team decided to have his young players screened before embarking on a tour of Australia. One of the schoolboys was diagnosed with a heart complaint and, while he still attended the turn, was told not to play any sport.
Mr McCall went on: "He went back to school in September and, one Saturday, when just knocking about a tennis racket, he dropped dead. Unfortunately it was too late. The health system let him down.
""With the likes of cancer and leukaemia, there are so many different problems to look at. I fully understand that, in the grand scheme of things, sudden cardiac death is down the line a bit. but that needs to change.
"We know as a family what it can mean to lose someone this way. It's almost like a thief has come into your house and stolen your son or daughter.
"We hope that, through this joint venture with the University of Ulster, we can stop this happening and raise awareness.
"We only hear of the John McCalls and the Cormac McAnallens because they are high profile people. Since then there have been a number of families in the Armagh area who have experience sudden cardiac death.
"It's the high profile cases like John an Cormac that bring it to people's minds. this initiative has come too late for the families in CRY. Before John died we as a family knew nothing about sudden cardiac death, but we now know that we can help stop other families suffering.
"The burden of grief never leaves. It's two-and-a-half years since John died. But you never come to terms with the death of a young person. It's against the grain. Having this knowledge and being involved with this group and getting the clinic up and running in some way softens the grief. I would love to be able to say it takes away the grief, but it doesn't. It softens it".
There's an urgent message in his words that is echoed by each and every member of CRY who, through their own personal losses, want others to take not.
"We would advise parents of anyone of secondary school age to get their children screened," Mr McCall added.
"I can't say that enough. It's not difficult, it only takes about 20 or 25 minutes.
"Young people who are doing sport are doing quite a bit of sport. They have a bigger sporting agenda than I did when I was at school 30 years ago. If there is a problem with someone's heart then the pressure of the extra sport can bring that to the fore, and in the majority of times that can lead to sudden cardiac death".
Of course, screening is something which CRY believes should be done as a matter of course, with much greater emphasis being put on getting the message across.
Mr McCall explained: "Italy is the only European country which screens all children as a matter of policy and they have the lowest incidence of sudden cardiac death. CRY as an organisation believes the statistics are a lot higher than the Government would say.
"We have been trying to get them to introduce screening in all secondary schools. We don't heart all of the deaths. John's death and Cormac's death has kicked off a lot of interest in Northern Ireland and helped get this deal going with the University of Ulster.
"We want to put it out there to the people of Northern Ireland, whether in Castlederg or Warrenpoint, Ballymena or Fermanagh. If someone hears of someone coming home from schools saying 'I'm having dizzy spells' or 'I'm feeling faint', it sets alarm bells ringing. We need to get them screened.
"We beat ourselves up as parents because we thought we should have seen something wrong with John.
"The match in which John died wasn't that intense. The game was start and stop. John died about 22 minutes into the game. About 10 days before he had been playing for the Royal School when they won the Schools' Cup. We thank God he didn't drop dead that day. We thank God it was during the international match. That in itself has helped raise awareness. If he had dropped dead in the garden it would not have had the same impact.
"We've got to use his death so that we can avert other families from the same fate. Parents must listen and they must take action".
The first ECG clinic will be held at the University of Ulster at Jordanstown on Saturday November 25. For an appointment, contact the CRY Northern Ireland Screening Administrator on 01737 363 222, or email firstname.lastname@example.org For futher news on the work of CRY - and information on cardiac conditions and sudden cardiac death - check out the website at http://www.c-r-y.org.uk/NI
Dancers launch new charity calendar
Yetminster's Dollywood Dancers celebrated their sixth birthday with afternoon tea and a birthday cake at the town's Crafty Times tea room and also took the opportunity to launch their 2007 charity calendar.
Last year's calendar raised a substantial sum for St Margaret's Hospice and this year founder Val Cookson decided its theme would be even more elaborate with the beneficiaries being Cardiac Rehab at Yeovil Hospital and CRY Cardiac Risk in the Young.
The Dollywoods were joined by all those who had contributed towards their all-day calendar shoot at Chetnole Mill where they were loaned four period cars for the 1920s setting. The day began with a spring wedding followed by a summer picnic, autumn race meeting and winter outing.
The calendar will be available in either full colour or sepia to give it a period feel, from many local outlets.
Charity to benefit from family run
An Armagh family are gearing up to take part in the Bupa Great North Run next month, all in the name of charity.
The six brothers and one sister will run the half marathon in Newcastle-Upon-Tyne on Sunday October 1 and all money raised will go to charity CRY - Cardiac Risk in the Young.
The Nicholson family are no strangers to the athletic scene as brothers Matthew, Mark and Paul ran the Addidas Silverstone Half Marathon in March in memory of royal School student John McCall, who died from a rare heart condition two years ago.
The family are raising sponsorship and awareness of CRY and all money raised will go to a fund wishing to set up a permanent screening facility so that sporting clubs can being their young athletes to have them screened for heart abnormalities and defects.
Every week eight seemingly fit and healthy people die in the UK from an undiagnosed heart condition and CRY works to raise awareness of Sudden Death Syndrome (SDS).
Matthew, his brother Same and the rest of the family will travel over to Newcastle on Saturday, September 30, and they are all looking forward to the challenge.
"This is the first marathon I will have run," said Sam Nicholson.
"But I am really looking forward to taking part and I hope that people will pledge money to this important charity."
People can make donations and sponsor the group by visiting http://www.justgiving.com/cashforcry and make the family's hard-work worthwhile. Using this website will also allow the charity to gain an extra 28 per cent back on all donations.
All donations are very welcome towards Matthew's other marathons which he is set to run in throughout October, including the Nike 10k in London on October 8, the Great South Run in Portsmouth on October 22, and the Dublin Marathon on October 31. He aims to continue to raise awareness and sponsorship for CRY.
Daywalker prepares to rock the crowds
Wirral band Daywalker will be giggling with the X Factor's Tabby this weekend.
But although the boys will be rocking the Buzz FM stage with the Sharon Osbourne protégée at the Wirral Show this weekend, entering the talent show isn't something the boys are planning any time soon.
Dave Robinson, lead vocals in the band, said: "Daywalker have nothing against the X-Factor or its contestants, but I don't think you would see us on it at this time as we are trying to make our mark in the industry through extensive gigging, promoting and getting our music out there.
"You will hopefully see us on TV at some point soon, but we would like it to be on the likes of Jools Holland."
Daywalker formed in late 2004 and consists of three ex-members of a heavy rock band and an acoustic song writing duo.
The band features Dave Robinson on vocals, Gary Turnock on guitars/backing vocals, Barry Waring on guitars/keyboards/backing vocals, Dave Kinder on bass guitar and Mark Evans on drums/percussion.
the band, who will also be playing at the Iron Door this coming Friday (August 4) are also currently embarking on a charity drive with their music.
Daywalker have been playing a string of gigs to support the Clatterbridge Cancer Campaign and the Linda McCartney Centre.
They will also be releasing a charity single to raise funds for the CRY appeal (Cardiac Risk in the Young), following the death of a close friend of guitarist Barry Waring.
Bereaved mum helps others cope with grief
The mother of Northamptonshire student Laura Hillier, who died suddenly three years ago from a rare heart illness, is coming to terms with her grief by supporting other bereaved families.
The 21-year-old trainee teacher collapsed without warning in her father's GP practice in Blisworth on June 20, 2003.
Dr Tony Hillier, his wife Joan and their son Mathew, were devastated by her death which came as a bolt from the blue.
Mrs Hillier said she was only able to start putting her life back together after receiving help from the organisation Cardiac Risk in the Young, known as CRY.
She added: "At first I couldn't do anything. the family was devastated and the whole of Blisworth was. It affected the whole community for a long time."
But now she has trained as a family bereavement supporter and is helping others going through similar experiences.
"Unless you had a child that died it is so difficult for anyone to understand how different it is from any other death. It helps to have someone saying it is quite alright to think you are going mad, because you do.
"The organisation matches people with someone who has a similar story to tell. Helping other people has helped me with my own bereavement."
CRY, which receives no external funding, is also trying fund research into the sudden deaths of young people from unknown heart conditions.
Some studies have indicated that sudden cardiac death is genetic and can be passed from a parent to a child.
Although it has no symptoms it can be detected through screening if it is known to be in the family and people can be fitted with a pacemaker to prolong their life.
Mrs Hillier said: "Research is so important. There is an awful lot of money being put into the health service at the end stage of heart conditions but no one is looking at what happens to the young and the devastation it causes."
College team runs half-marathon in Seb's memory
Two years after the tragic death of Sebastian English, a 15-year-old boy at Lord Wandsworth College, 15 teachers and pupils ran the Bath Half-marathon in support of the charity Cardiac Risk in the Young (CRY).
Seb died of a rare genetic disorder that had also claimed his father's life 12 years previously and CRY seeks to raise awareness of the syndrome which every week claims the lives of eight "apparently" fit and healthy young people in the UK from undiagnosed heart conditions.
The bonus for the eight upper sixth boys from Hazelveare House, Seb's old house, and the seven male and one female member of staff was they were running with some of the most famous names from world rugby of the past 20 years.
Simon Halliday, the ex-England and Bath captain is a patron of CRY as he was a close friend of Seb's father and he invited the college to join his team.
So after a 7.15am start from Hampshire, two hours later the staff and pupils were breakfasting in the Bath RFC clubhouse with Will Carling, Jason Leonard, Michael Lynagh, Mike Teague, and many others as well as BBC presenter John Inverdale.
Ten of the 15 school team members had never run a half marathon before, but all survived the experience and, of course, all recorded a personal best, which for some was around 90 minutes.
Perhaps special mention should be made of the only female member of the team, geography teacher Sam Ludlow, who in seven weeks went from complete beginner to a two-hour half marathoner. The team had trained together for only 10 weeks, but with warm sunshine and enthusiastic support from parents and friends, it was a relatively painless, and even enjoyable occasion.
The school has supported the runners and more importantly CRY by a mufti day and a sizeable sum has been passed on to the charity.
Nurse's heart stopped at the shock of her
Nurse Lisa Jane Browne died from heart failure brought on by the shock of a ringing alarm clock, an inquest ruled yesterday.
The 27-year-old, who died in 1998, suffered from an undiagnosed heart abnormality which caused her hear to stop beating after the sudden shock of her 6am alarm call.
Last year experts discovered the paediatric nurse had the rare disorder Long QT syndrome (LQT2).
The condition affects the electrical system of the heart, which can cause sudden unexplained death in young people.
Her mother, Doreen Harley, 58, of Connah's Quay, always suspected her daughter died of the hereditary disorder and campaigned for the inquest into her death to be re-opened. At the original inquest in August 1998, the coroner recorded an open verdict.
Yesterday, a second inquest was held in Warrington where the coroner for Cheshire, Nicholas Rheinberg, ruled that Lisa died from heart failure due to LQT2. He recorded a verdict of death by natural causes.
Speaking after the inquest, Mrs Harley said she hoped her eight-year battle to discover the real cause of her daughter's death would help save the lives of others.
Following Lisa's death, it was discovered that her father Terry, 61, her sister Rachel, 33, and her nephews Jack,, nine, and Adam six, all had the illness. They have all received treatment and are living normal lives.
Mrs Harley called on the Government to provide screening for young people to diagnose heart problems.
She said: "Long QT Syndrome has affected five members of our family over three generations. An ECG test could well have saved Lisa's life.
"All of the causes of sudden cardiac death, many of which are genetic, are treatable once diagnosed and most people are able to live a relatively normal life.
"There are at least eight deaths a week to sudden young cardiac death, the majority of which could be prevented if there was a national screening programme for all teenagers at around the age of 14.
"How many more young people have to lose their lives to sudden young cardiac death before the Government will agree to finance the necessary ECG screening?"
The inquest heard that Mrs Browne, who worked at the Countess of Chester Hospital, suffered from extreme exhaustion in the last three years of her life.
She complained on a number of occasions to her GP, who prescribed her a low dose of an anti-depressant which she took for a few months from October 1996.
The inquest heard the anti-depressant should not be taken by anyone suffering from Long QT syndrome.
Mrs Browne's husband Stuart, 38, of Ellesmere Port, Cheshire, told the inquest he found his wife dead in bed at around 7am on January 10 1998 after she failed to wake up for work.
He said: "Lisa Browne died suddenly in bed, probably after her alarm went off, waking her suddenly."
The coroner said he believed it was very important to reopen Mrs Browne's inquest in light of the new evidence into the cause of her death.
Mr Rheinberg said: "The importance of these particular findings and facts, I don't think can be over-estimated.
"Lisa suffered a sudden death at a very young age and I think it very likely had her condition been diagnosed, she would be alive today.
Had it not been for the dedication of her family in finding out the cause in relation to Lisa's death, then clearly Rachel and her children and Mr Harley would be very much at risk.
"It is a condition which, if undiagnosed, can lead to unexplained death.
"If diagnosed, it can be treated and death avoided."
Mrs Harley said she would continue to campaign alongside the organisation Cardiac Risk in the Young.
She said: "Eight years has been an exceptionally long time for our family but the inquest has given us the answers we so desperately needed.
"We will now finally be able to bring about closure following Lisa's tragic death."
What is Long QT Syndrome?
Long QT Syndrome is an uncommon, hereditary disorder of the heart's electrical rhythm that can occur in otherwise-healthy people.
It usually affects children or young adults.
the duration of the QT interval is a measure of the time needed for recharging the electrical system after each heart beat.
Sufferers have a long QT interval than healthy people during physical exercise, intense emotion - such as fright, anger or pain or a startling noise.
This leaves the person vulnerable to a very fast, abnormal heart rhythm, known as torsade de pointes.
When this occurs, no blood is pumped out from the heart, and the brain quickly becomes deprived of blood, causing symptoms of sudden loss of consciousness, such as fainting, and possibly sudden death.
It can also occur during sleep or arousal from sleep.
Symptoms begin in pre-teen to teenage years, but may occur in newborns to middle age.
This syndrome strikes one in 7,000 people. In America, it causes 4,000 sudden deaths in children and young adults each year.
It can be diagnosed by examining a person's electrocardiogram (ECG).
Drugs known as beta blockers control the condition in nearly 90% of cases. Some patients need a pacemaker and implantable defibrillator.
Penguin moved too fast for me
There are many tales to be told about last Sunday's Bath half-marathon. On the plus side, there was the great Australian outside-half, Michael Lynagh, who at 11 o'clock swore that his chronic back complaint made it impossible for him to take part, and who at 1pm was hurtling down the finishing straight. He promptly announced he'd loved it so much he wanted to set up a running club.
On the flip side, there were rumours of a former England star stopping off en route at a friend's house for some chocolate biscuits, and then waiting an hour for the runners to come past again before rejoining the race.
Whatever the truth of that, a huge amount of money was raised for CRY, a charity researching cardiac problems in young people, and to see the mammoth Paul Ackford storm home in under two hours was one of the athletic sights of the year.
I spent most of Sunday morning following a man who had emblazoned on the back of his running vest 'helping the world's rarest penguin'. But to do what? Snowboard? Give up smoking? I'm sure the answer was on the front of the T-shirt, but at eight miles, this penguin picked up the pace and disappeared into the distance. So sadly, we will never know.
Brothers' marathon effort for CRY
Three Armagh brothers are to run a half marathon in memory of Royal School student John McCall, who died suddenly two years ago with a rare heart condition.
Brothers Matthew, Paul and Mark Nicholson, former students of the Royal School, Armagh are running the Adidas Silverstone Half Marathon on Sunday 19th March.
Explained Matthew: "We're running to raise funds for Cardiac Risk in the Young (CRY).
"John died of heart failure whilst playing rugby for Ireland U19. He was an amazingly talented young man, whose life was cut short at 18 by a heart condition.
"I got to know him and his family very well through the Royal School Armagh's rugby community," continued Matthew.
"John was gifted in many areas - most significantly with his artistic flair and raw skill on the rugby field. Even for a man of 18 he had achieved so much in the sport - captaining his royal School 1st XV side to Ulster Schools Cup victory and going on to represent Ireland in the U19 Rugby World Cup in South Africa.
"The very recent death of Richhill man Andrew Calvin - my mother's cousin's son - has also further highlighted the fact that we need to be concerned about cardiac risk in the young," he added.
Every week eight apparently fit and healthy young people die in the UK from undiagnosed heart conditions. CRY works to raise awareness of Sudden Death Syndrome (SDS) and campaigns for proactive screening of young people. It offers help and support to those who have suffered a loss, provides medical information, carries out Mobile Cardiac Screening and ECG Testing Programmes within local communities and contributes to medical research.
Any money the Nicholson brothers raise will go to local screening sessions.
Matthew explains: "I have spoken to the charity representatives, and they have assured me than any money we raise will go to the Northern Ireland Screening Fund.
"We have raised £1,533.59 so far and would love to increase that further. My brother Paul and I hope to get substantial donations from the banks we work in and hopeful more online donations between now and the 19th March."
The Nicholson brothers and other team members Matt Cunnane, Sean Flory and Nigel Brunt (Matthew's friends and work colleagues) are training hard in preparation for the half marathon.
Matthew said: "They recommend 15 weeks of preparation for your first half marathon. I have been training since mid-December and am currently up to running 10 miles per session. Mark and Paul didn't start until the new year. I am aiming to finish inside 120 minutes - my brothers just want to finish!"
Mark (32) who lives near Portadown, is Director of Greenway Recycling in Mountnorris. He is fully qualified PGA golf professional.
Matthew (25) graduated from Abertay University in Dundee with a degree in BSc Computing then moved to the Canary Wharf area of London and got a job with HSBC.
Paul (27) graduated from Heriot Watt University in Edinburgh with a degree in Economics then got a job with HSBC Investment Management in London. He currently works in London for Japanese Asset Management Company, Nomura and recently married Marie in her home town Sweden.
For more information about the charity run or to sponsor the Nicholson brothers visit http://www.just-giving.com/mattynick
Schoolgirl died of rare heart defect
Schoolgirl Alaina Taylor died of a rare heart defect, the Grimsby Telegraph can reveal.
A pathologist has confirmed that the 15-year-old's death was caused by Diseased Myocarditis, an undetectable viral infection, which caused the heart valves to malfunction.
The Telegraph reported how former Tollbar Business and Enterprise pupil Alaina was found in her bed in November.
Her parents, Sonya and Carl, of Oldin Court, Scartho Top, believed then that she had choked in her sleep. But a thorough post mortem revealed that she was suffering from the heart condition.
Mrs Taylor said: "We just want to put the story straight, now we have got the full facts. It still should not have happened, but I hope that we can soon find a cure.
"Alaina absolutely loved life, and life loved her up until this sad day. How I will live without her I just don't know, but I know I had a very special daughter that I shared so many things with.
"Even at the tender age of fifteen she was so understanding and caring to her family. She was my friend and soul mate, we were so much alike."
Struggling to come to terms with her daughter's death, Mrs Taylor is now looking to the future with purpose.
"I have to try to carry on for my other two children, who have been a great support to me and my husband, and they have been lucky to have really special partners of their own that have been there for them."
The whole family is now committed to the charity CRY, an organisation which raises awareness of Cardiac Risk in the Young and Sudden Death Syndrome.
Alaina's best friend, Leanne Markham, has arranged a concert at the Winter Gardens, on Friday, with a line-up of popular local bands preparing to entertain the crowds.
And the dedicated friend has also teamed up with Alaina's sister Kelly (20), to do a sponsored parachute jump, on March 18, at Hibaldstow, near Brigg. Proceeds from both events will go to CRY.
Anyone interested in sponsoring the jump can log onto http://www.justgiving.com/leannemarkham
Tickets for Friday's gig, which starts at 7pm, can be bought from Solid Entertainments, Cleethorpes' Winter Gardens or from a family member.
Mum wins battle for fresh inquest into nurse's death
A North Wales mum whose daughter died when her "alarm clock" was triggered, yesterday won her five-year battle for a new inquest.
Nurse Lisa Browne suffered Long QT Syndrome - but it was only discovered after an inquest, which recorded an open verdict.
Experts said then they could not find a reason why she died in January 1998 - but tests by Swedish geneticists later showed she had the genetic electrical abnormality in her heart.
Lisa's sister Rachel was also diagnosed with the defect after she had tests and had surgery to fit a pacemaker, called an ICD. Three years ago she was asleep when son Adam woke up screaming and the sudden noise caused Rachel's heart to stop. The ICD kick started her heart.
And Adam was also diagnosed with the disorder while other family members carry the gene.
Lisa's parents, Terrence and Doreen Harley, of Halkyn View, Connah's Quay, Deeside, say it is in the public interest for a fresh inquest to be called.
Doreen, a regional representative for the charity Cardiac risk in the Young (CRY), set up screening sessions in Flintshire for young people. Out of 79 tested, seven were found to have cardiac problems they were not aware of.
Mrs Harley previously said: "Neither of us could ever accept that she died for no reason.
"Finally, to put everything in place we need a death certificate showing the new cause of death. It is definitely the case that she had Long QT Syndrome and she died when her alarm clock went off."
Yesterday at London's High Court Mrs Justice Hallett and Mr Justice Nelson ordered coroner Nicholas Rheinberg to hold a new inquest into the death of Lisa, a paediatric nurse at the Countess of Chester Hospital.
In written submissions to the judges, barrister Keith Morton said 27-year-old Mrs Browne was prescribed a drug to counter depression when her Long QT Syndrome was misdiagnosed, and it could have exacerbated her condition.
He added that it was previously believed that Long QT Syndrome could not be diagnosed following death, but as a result of Mrs Browne's case, that is no longer true.
The barrister argued both points raised matters of 'public importance.'
Mr Morton said relatives of other Long QT Syndrome victims could benefit from "post mortem diagnosis" as they too could have the disease.
And he added that, if doctors knew the dangers of prescribing drugs that could have a detrimental effect on Long QT Syndrome sufferers, lives could be saved.
No date was set for the new inquest which will take place in front of Chester coroner Mr Rheinberg.
The court heard Mrs Browne suffered stomach cramps, throat infections, bowel pains and other complaints but Long QT Syndrome was never diagnosed while she was alive.
Read more about Long QT Syndrome