Quarterly Update Issue 36
CARDIAC RISK in the YOUNG CRY Patrons: Rob Andrew MBE, Jeremy Bates, Ian Botham OBE, Mark Cox MBE, Nick Gillingham MBE, Rob Jones MBE, Professor WJ McKenna, Sir Steve Redgrave CBE, Professor Michael Vincent.
CRY Unit 7 - Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363 222 Fax: 01737 363 444 Web site: www.c-r-y.org.uk e-mail cry@c-r-y.org.uk
CRY
Meet our Conference Representative Eddie Farrow
CRY
Hi my name is Eddie Farow and I would like to tell you about what happened to my family in October 2001. We have 3 children, Fiona 19 and Cathryn and Bradley now 16. I am a retired nurse, and my husband Dave a telecom engineer. Bradley had complained of a headache and not feeling well, although he couldn't say why. Later that evening he collapsed and was taken to hospital but they sent him home saying he was fine. But it wasn't fine at all. Bradley still complained of feeling unwell and of headaches, which would not go away even with the strongest of painkillers.
Bradley and Eddie Farrow at the Parliamentary Launch in April 2002
We returned him to hospital but again were told he was fine. We went home and kept an eye on him. He kept feeling his heart race, but he'd only be sitting in the chair; he kept going light headed and having head rushes, but he'd not be doing anything to bring them on; we took his pulse and noticed that it would be racing when he wasn't doing anything and then next thing you'd not be able to find it. So Bradley went back to hospital again. They were not pleased to see us and I was told I was being neurotic, but I said that I wasn't going anywhere until they found out what was going on. So Bradley was admitted, and given an ECG which was faxed to the Royal Brompton, who immediately requested he be transferred. We learned that Bradley had a sudden death syndrome called BRUGADA. Not a lot is known about this syndrome, except that it is genetically inherited. It makes the heart beat incorrectly and causes cardiac arrest. This is what happened when they first said he had fainted. He hadn't fainted at all, he'd gone into cardiac arrest, and had hit the floor so hard it re-started his heart. If he hadn't been standing up when it happened, he'd be dead. The only treatment is to be fitted with an ICD. Bradley is now a Founder Member of the CRY Surgery Supporters Club which helps give advice and support to other young people with these syndromes who need similar surgery. The rest of the family had tests. Both girls showed some signs, but neither have had episodes, and the family have joined Dr Raymon Brugada's genetic research into the syndrome. I don't blame the A & E doctor for not noticing the abnormal reading. He's not a cardiologist, and ECG's should be read by cardiologists. I joined CRY shortly after Bradley had his implant. I felt that CRY was trying to do the things that need to be done in this field. They want to raise awareness of these conditions - when Bradley was diagnosed with Brugada the hospital and G.P. had never heard of it. They want to screen for these conditions - a lot of heart conditions can show up on an ECG. They want to show that you can have a normal life with these conditions, and they want it made clear that cardiac conditions are not just for the unfit or the elderly but also fit young people. I also think the support CRY offers families is crucial and I am doing the CRY Counselling Course so that I can try and help other mothers cope when their child has been diagnosed. I was delighted when I was asked as a volunteer to represent CRY at Conferences around the UK. Conferences are all about raising awareness with the medical profession and the public. I so nearly lost my son. We want to save lives. That's why I will do all I can to help CRY to meet all its aims. Eddie Farrow
Issue 36
Cardiac Risk in the Young
|
1
CRY
Issue 36 Newsletter by the Chief Executive
Rarely can a death in sport have cut into the quick of public consciousness more sharply or have illustrated more graphically how undiagnosed heart conditions can suddenly kill apparently fit and healthy young people than when Manchester City and West Ham footballer Marc-Vivien Foe died during a televised football match whilst playing for his native Cameroons. We received an avalanche of public and media enquiries after this tragedy which led to 4 national newspaper articles and a BBC National News interview with CRY's Trustee Dr Sanjay Sharma and an interview on Sky with CRY's Chairman Dr Greg Whyte. This tragedy provoked considerable interest in our programme and in particular our screening campaign. It was providential that shortly afterwards we had the opportunity of securing the services of Research Fellow Dr Jayesh Makan who will be training under Dr Sharma, Consultant Cardiologist at Lewisham University Hospital
CRY
parents, partners, grandparents, siblings and friends who had suffered the loss of a young sudden cardiac death.
Our CRY Bereavement Supporters 110 delegates registered for the event and were able to meet our 11 Bereavement Supporters who have been recruited from all over the UK to help others who suffer from a similar loss. Our first group of CRY Bereavement Supporters have just completed their 2 years of counselling training based at the CRY office and a recognition of their commitment is the calculation I made that they had spent over 1,000 hours in travelling time alone to achieve their Skills and Theory Certificates.
Jayesh taking an ECG at the Eton ECG testing Our bold decision to have our own CRY funded Research Fellow working in tandem with our screening programme, has already made a significant difference not only to facilitating screening events but also because we now have access to virtually online medical expertise to respond to urgent queries about our conditions and so can offer a very special facility to all those who contact us.
The CRY team outside the Eton Medical School Jayesh's services proved invaluable when we were invited by Eton School to test their students. As with so many schools a congested timetable means availability of pupils is limited and at this event we were required to ECG test 299 boys in a period of 2 days which was successfully achieved thanks to our remarkable CRY screening team, which on this occasion included technicians working in tandem from a bank of 6 ECG machines. Our inaugural Bereavement Support Day, funded by the grant awarded by the Department of Health, was held in June at the Institute of Child Health and exclusively dedicated to all those 2
|
Cardiac Risk in the Young
The morning sessions focused on our outstanding speakers. CRY Patron Professor Bill McKenna and British Heart Foundation (BHF) Research Fellow Dr Elijah Behr explained how young people can be harbouring these potentially lethal cardiac conditions, and why they cannot always be detected at Post Mortem;this was followed by an extended Q and A session; Dr Sanjay Sharma gave us all a privileged insight into the perspective of the cardiologist in dealing with families of victims of young sudden cardiac death; and CRY's Counselling Course Tutor Julia Cayne discussed Professor Bill McKenna emotional learning and bereavement. The afternoon workshops concentrated on the specific nature of the loss, and gender issues in bereavement, and enabled delegates, many of whom were for the first time meeting others in a similar position to themselves who were coping with the same aspect of grief, (sibling/male/female/partner/parent) to start to vocalise their feelings in the knowledge that they would not only be heard - but also understood. Our Rainbow Group exclusively for young people under 15 offered the opportunity for children to attend and meet other youngsters, and charities that promoted the event (British Heart Foundation, Cardiomyopathy Association, The Compassionate Friends, Children's
Dr Elijah Behr
Dr Sanjay Sharma Issue 36
Heart Federation and Child Bereavement Trust) had information on their organisation displayed which was also included in our Bereavement Support Day leaflet especially printed for the occasion. Next years event will be in the same venue on Saturday June 12 and the Agenda and Reservation Form will be advertised on our website from January 2004.
CRY supporter Jean Johnson was invited to speak on Radio 4's Home Truths about the sudden death of her son Craig, the terrible suffering his death had inflicted on her family and her dream that all young people should be given cardiac evaluation before they leave school to identify whether they are suffering from an undiagnosed, potentially lethal heart condition.
Jeff Morland, Chair of Labour Party North, responded to an invitation to speak at his old school in memory of his son Levon who died in his sleep age 22 of Wolfe Parkinson White. Levon and his twin brother Aran had also attended the school, who voted unanimously to choose CRY as their charity for the Great North Run with 70 students flexing their muscles and proudly sporting the CRY vest to run for the Levon Moreland Memorial Fund. Such an impressive turnout of young people from one school is guaranteed to raise awareness of CRY and helps so much to focus public attention on our aims.
UK campaign launch; Mrs Pat Russell, Jean Johnson, Linda McAvan, Julie Carder, & Mayor Richard Russell
Great North runners in memory of Levon Morland
Jean, joined by Julie Carder, expounded the same pertinent message, in their CRY sweatshirts, when they launched the MEP’s World Health Organisation (WHO) initiative with CRY. They were also invited on an extended slot on BBC TV's "The Politics Show" in response to the news of the MEP's crusade, which was launched by Labour MEP's Linda McAvan and Catherine Stihler in the European Parliament in Brussels calling on WHO to officially recognise and name as Sudden Death Syndrome the deadly heart conditions that we believe claims up to 8 young lives a week in the UK. Linda became involved after the 20 month old son of her Parliamentary Researcher Tracy Cook died and invited CRY to work with them to highlight their initiative with the media to raise awareness across the globe of young sudden cardiac death linking with SADS Australia and QT Kanga (see Julie's Interview in Kids for CRY).
The Medical Technology Group, founded in February 2000, aims to raise the profile of how medical technology can both save and improve quality of life for patients. As a Founder Member I was invited to give a talk on CRY's aims and achievements at a recent Patient Advocacy meeting hosted by Medtronic, one of the company's involved and was particularly pleased to have the opportunity of highlighting the work we do with our Surgery Supporters Club. Medtronic is a large international organisation that amongst other devices makes Internal Cardiodefibrillators (ICD's) that has been a long term supporter of our aims.
The Taits with Catherine Stihler, QT Kanga & CRYTeddy The launch of the WHO campaign in Brussels to recognise these deaths with an International Disease Code displayed our literature and resulted in further interviews on Carlton, Radio Five, Radio Sheffield and Greater Manchester Radio.
Kay Linnington’s story in the BHF Flyer After the publication of their 3 Research papers earlier this year the British Heart Foundation worked with CRY on their flyer "a ticking time bomb" sent to their donor base which told the tragic story that affected CRY's County Representative in Oxfordshire, Kay Linnington, and how she lost her 28 year old partner, Ian. The appeal "the tragic mystery of SADS" focused on recent BHF research, giving CRY's website and highlighting our mutual attempts to help raise awareness of "this hidden killer." Issue 36
MEP (Labour Health) Catherine Stihler met up with CRYTeddy and QT Kanga and Divisional Representatives in East of Scotland, Andy and Maggie Tait, drawing attention to the campain north of the border. These two appealing little ambassadors have already had a wonderful reception from CRY families in the UK with so many exciting invitations that their diary for the next 3 months was filled within 10 days of our first mailshot! Thank you for welcoming them and helping us in our efforts to develop every opportunity we can to reduce the death toll of devastating loss that these appalling tragedies leave in their wake. Deaths which strike swiftly, without warning, may be genetic, unexplained, and inflict such grevious suffering on those affected.
Cardiac Risk in the Young
|
3
CRY
Jan Smith CRY’s Screening Administrator Reports from The Heart Hospital
Hello and a warm welcome from CRY's satellite office, which has relocated to the Heart Hospital in Central London. The Cardiological Sciences team, previously based in St. George's Hospital Medical School, moved to their new home in April 2003 - and CRY's satellite office followed in late August. The unit, which is housed in 47 Wimpole Street, is currently known as the CITY Group, which stands for Cardiology in the Young. It has been Professor McKenna's long term goal to establish the UK's premier cardiac service for young people with inherited cardiovascular disease, together with a support base for young people seeking cardiac care. The diagnosis and management of the target audience requires a wide range of skills, and he has drawn together a multidisciplinary team of paediatric and adult cardiologists with expertise in heart muscle disease, arrhythmia specialists, geneticists and clinical and genetics counsellors. CRY has been offered space with the CITY Group, together with GUCH (Grown up Congenital Heart Disease) and CMA (Cardiomyopathy
CRY
Association). Patients seen by Professor McKenna and his team at St. George's can be reviewed at the Heart Hospital, which is easy to get to and a superb facility. Please note that newcomers to CRY, who are seeking a referral, should discuss this with Alison Cox. If you have any written materials to send me, the correct postal address is Jan Smith, CRY Screening Administrator, c/o CITY Group, (Professor McKenna) The Heart Hospital, 16-18 Westmoreland Street, London W1G 8PH. The best telephone number to get me on is 020 7 573 8888 ext 4509 and the e-mail is jan.smith@uclh.org. Faxes can be marked for my attention and forwarded on 020 7 573 8859 - but as the fax is three floors away, I would suggest you call me to let me know it's on its way.
Family Screening Events Julie Hatton in Redcar organised her first Screening event, for 25th October, and we are very grateful for her hard work and tenacity in setting up a really excellent event. A big thank-you to everyone involved, particularly Chris Crawley for allowing CRY to use the Eston Sports and Leisure Centre, and Samantha, Gillian, June, Yvonne and Becky for their support on the day, which was so helpful. By the time this information is released we will have been back to
North Wales, for Doreen Harley's second screening of the year on Saturday, 8th November. Such was the response in February that a second event was necessary indeed, over half the places were already taken before the event was advertised. Thank you to all those CRY families, over 2003 who have willingly given their time and put a great deal of effort and organisation into making these events possible. Thank you too, to our terrific screening team who are becoming increasingly well travelled. Well done!
ECG Testings Sally Reid held a further ECG testing on 30th and 31st August for young football players playing in the Lewis Marsh Football Tournament. Thanks to Sally and her team for their support and interest in taking this project on again. Mr George Moody, our Volunteer Co-ordinator based in the Western Isles, is in the final stages of co-ordinating an ECG test-
ing session which is taking place over 12-14th November - numbers are now moving towards 100 clients for this event which is an excellent response. This event has been offered to the community as a whole and we hope to have results out prior to Christmas. This event has been made possible by the Joanne F. Fotheringham Memorial Fund.
Sports Screenings Our Screening team attended Welwyn LTA on 9th September, Leeds LTA on 12th, Rugby League in Leeds again, on 13th September, and Loughborough LTA on 17th September. This was
a bit of a whistle stop tour for our team, who coped fantastically with the tight time frame.
Equipment placements This has been an amazing few months for raising awareness through the donation of equipment and I hope the next issue will be able to show some press pictures from the placements. Caroline and Peter Gard, Divisional Representatives for the East of England have donated their third ECG machine. This equipment will be placed in The Surgery in Walton on Naze, Essex, The Lewis Marsh Memorial Fund has donated a Defibrillator to CRY. This is a superb piece of kit. Naturally, we hope we are not required to use this at one of our CRY events. However, it's presence provides our screenings with an improved level of safety and professionalism and we are very grateful to have this made available. In Wales, the Christiaan Smith Memorial Fund has funded five pieces of equipment for medical units in South Wales, namely three defibrillators, an ECG machine, and cardiac event monitoring equipment. Mr Tony Webb, Head of Operations at the Central Clinic in Swansea, has housed equipment in the first instance,
prior to it being placed in individual surgery settings. It is hoped that those units where equipment is housed will generate further funds for equipment, which will, in turn, benefit other surgery settings. The Ian Willoughby Memorial Fund has purchased two pieces of cardiac event monitoring equipment, for the West Street Surgery in Chipping Norton, Oxfordshire and The Horton Hospital, in Banbury, both of whom are delighted to have been considered to receive equipment. CRY is very proud to announce that The Beachwood and Easterside Social Club in Middlesbrough, have become CRY's first external group to purchase and donate equipment in memory of a young person. The Club has shown incredible support for Margo Wright, who lost her daughter Mandy Blake. An ECG machine was funded in record time, which has been placed in the James Cook University Hospital, Middlesborough, for use in the Women and Children's unit.
External Groups seeking to support CRY through purchase of equipment If you know of any fundraising organisations in your locality who are not directly linked to CRY, but who do good works in the community, you might want to consider approaching them to support you in your aim to purchase equipment. This new service is
straightforward and effective. They can contact me directly, via CRY and I will be delighted to send them an information pack. This may be of special interest to companies who have a charitable allowance budget, or groups such as the Masons or Rotarians.
Future Events Our Testing Clinic at Colchester has made great strides and we Eton - we hope to be back at Eton College in the early spring of would like to thank Dr Jonathan Geldard for his advice and input 2004, together with Millfield School. We have our first family in drawing this programme together. screening agreed for February 2004, dates to be set, and this is funded by the Mandi Blake Memorial Fund. Please don't hesitate to contact me if you have any queries regarding the move, or anything to do with screening, testing or equipment purchases. Kindest regards. Jan Smith 4
|
Cardiac Risk in the Young
Issue 36
Report from Steve Cox CRY
CRY
One day I hope I will suprise myself and have an Update ready and printed before I expect to! This one has as usual taken me far longer than I hoped but I do hope it arrives before Christmas to keep you informed of new developments at CRY. Updates are getting bigger and taking longer to produce but our dynamic website is updated weekly, primarily with the latest news articles. Please don’t worry if you are not included. If you have had an event which we have not featured just give me a call or email me your text. As you can see it is great when you send in photos to highlight your write ups. We can’t have enough photos of people during the event, like the exhilaration during a parachute jump or the sense of achievement at the end of a running event. So much effort goes into fundraising for CRY we hope to be able to share the experiences for everyong who supports us in so many different ways. If you would like the photos returned, this is not a problem just make this clear - but I often like to hold onto them until the Update goes to print in case the photo needs rescanning.
New CRY literature Our Presentation Folders have been such a great success that we have just reordered another 2000. We have also had a 10,000 reprint of the new General Leaflet with the achievements updated, including that CRY has now funded over £400,000 of cardiac medical equipment to doctor’s surgeries and hospitals, as well as the funding of a CRY Research Fellow in Cardiology. We have also re-printed the Bereavement Support Day leaflet as this will now be an annual event.
CRY Christmas Cards Fran and Jenny are doing a tremendous job keeping the Christmas Card orders sent out on a weekly basis. We have already had to have a reprint on one card and have passed the £5,000 mark, much of which has been through your incredibly generous donations made with the orders. 10,000 leaflets were distributed www.c-r-y.org.uk\christmas_cards_charity.htm
If you would like us to consider a design for next years Christmas Cards please contact me to discuss. We are particularly interested in people who may want to run a competition in a local school or art college
New website pages Annual Events If you have an annual event you would like CRY to help promote please email me the details and a photo(s) and we will set up a web page in the Upcoming Events section with contact details. This may be especially relevant to those events which are open to the public or promoting/requesting raffle prizes etc...You would be surprised what can happen when a page like this is set up. Mat Wilson received a few free pairs of socks to run across the Sahara after sponsors saw his page on our site!! www.c-r-y.org.uk\upcoming_events.htm
CRYTeddy and QT Kanga on the web If you would like to keep in touch with CRYTeddy and QT Kanga’s journey around the UK this can be viewed on the website. www.c-r-y.org.uk/qtkanga.htm
Updated Q & A page If you have a medical question which you feel would be helpful for yourself and others to know the answer to please email it to me. Jayesh is following up all medical requests and the responses will be posted on the website. www.c-r-y.org.uk\Questions_Answers.htm
Medical Tests We have introduced a new area on the website in the Medical Information section where you can see the type of cardiac tests that may be offered to a person referred to a cardiologist as well as the tests required if an abnormality is found. www.c-r-y.org.uk\cardiac_tests.htm
Personal Fundraising Page - Online Having your own personal Web page for online fundraising in addition to the usual sponsorship forms allows you to concentrate on the event whilst collection of money and Gift Aid declarations are taken care of by Justgiving - a specialist fundraising organisation we are pleased to work with. Some of our runners in last year's London Marathon asked us to create this facility and the result was astonishing. Donations were received from friends, colleagues and supporters both in the UK and around the world helping them all to exceed their pledges. Any event you are considering can benefit from this service and we will be delighted to set up your page for you. Visit www.c-r-y.org.uk/justgiving.htm for full details.
London Marathon 2004 - Great North Run September 21st 2003 Well done to all those who ran in this year’s Great North Run. We had our largest team to date of over 100 runners, with 70 running in memory of Levon Morland and many heart costume runners managing to keep CRY well in the limelight. The time for direct entries for the London Marathon has now passed, so unless you are lucky enough to have got a direct place and are wanting to run you will need to apply for CRY’s Golden Bond Scheme. There are a limited number of places available so you will need to act quickly. Last year the majority of the places were filled within 2 weeks of the rejection letter going out. We are reserving a small number of “reduced pledge” places for people
who have been long time team supporters of CRY. These places are for heart costume runners only and will require the “reduced pledge” of £800. If you would like to take up one of these places you will need to contact me directly. All other runners will need to pledge £1250 whether running in a heart costume or not. Unfortunately we have had to cut back on the number of subsidised places available, because we have less Golden Bond places than in previous years and because the London Marathon is the most important annual event for securing core fundraising for CRY.
If you would like an A4 or A3 copy of any of the pages or articles in this update (laminated) please contact the office Issue 36
Cardiac Risk in the Young
|
5
CRY
Sudden Deaths and the Authorities. By Peter Edwards. MITAI.
CRY
As a serving Police Officer I have been asked by Alison Cox of C. R. Y. to produce a short guide of what to expect when a sudden death occurs in relation particularly to young victims and what to expect in relation to enquiries by various authorities. This is by no means an in depth technical study nor will it necessarily deal with specifics as procedures will obviously differ from place to place. Sudden death at any time but particularly with regard to the young is probably the most traumatic thing that anyone will have dealings with. Not only are relatives subjected to the most appalling psychological stress from what has occurred but added to this are strains placed upon them by dealing with the various Authorities they will come into contact with and especially any Police enquiries. Any sudden death and especially that of a child will be subject to investigation of some form or other. This may be through the Coroner's Districts or usually, in the case of a child, by the Police who will conduct enquiries into the matter. The reason for Police involvement is obvious and is in case of suspicious circumstances. It may seem that parents are being automatically interrogated as if they are suspect murderers and subjected to the fear that they are going to be carted off to jail and locked up. Questions are obviously asked to establish the facts surrounding what has occurred and usually this information goes to assist the pathologist and finally the Coroner in inquiring into the cause of death through the means of an Inquest. Usually the enquiries are conducted by a uniformed officer, and while it may seem that their manner may not be all that could be hoped for, it must be remembered that that officer probably is young in service and has no more wish to be there than the family to deal with him or her. Usually the dealings will be fairly straightforward but could involve the attendance of a supervisor in the form of a sergeant and possibly a Scene of Crime Officer (SOCO) Photographer. While to the victim's family this is a huge intrusion and investigation it is not usually indicative of being the start of a murder enquiry. If there are suspicious circumstances it will soon become blatantly obvious as the first things that would happen would be that the scene would be sealed, everybody removed from the premises, and a log would be kept of comings and goings. Police Officers would start to don protective paper suits and there would be a massive Police presence and involvement. If this is not occurring the likelihood is that the family is not about to be taken away and locked up although this will still be a fear while persons are still in a state of shock and numb as to what is actually happening to them. Usually, unless the deceased has been under direct medical treatment, a post mortem examination will be conducted to establish a cause of death. This is because a death cannot be certified unless a medical practitioner has had direct dealings and is aware of what has transpired. Occasionally, especially in young children the post mortem will be inconclusive. This is by no means unusual in dealing with the conditions lumped under the heading of Sudden Death Syndrome. Again it does not mean that anyone is going to be immediately arrested and locked up. It probably means that the cause of death is not obvious and cannot immediately be established. Further tests may be required. Something that should not be overlooked is the previous medical treatment of the deceased and any relevant medical history or observations. This is vital, especially if the records were not local, as they may not be automatically available to the Pathologist conducting the post mortem. A history of unexplained happenings or the connection with certain events that have occurred in the past may be vital in reaching certain conclusions. Also one should be guided by any dealings with local Coroner's Officers. They are usually extremely approachable and can usually clear up any fears with the answering of a few simple questions. Do not be afraid to ring them and ask. They are the experts and can explain the whole system. Coroner's Inquests, while they are a court of law, are what the title implies - an official Inquiry into an unexplained death in an attempt to establish the facts. They are not places where persons will be questioned as if they are at a Crown Court. Questioning is only allowed to establish fact, not to find a person guilty or not guilty of an offence. Fear of authority and the unknown is only natural especially as I have already stated when one is in a state of shock and quite unable to function correctly as a normal human being. All of us who deal with this kind of situation are well aware of this and will deal with the matter as delicately as possible. However, the questions do have to be asked and it must be remembered that they are sometimes also for the good as some of these conditions are hereditary and it may prevent further tragedy in the future. I hope that this short article goes some way to assist with giving an insight into the world of officialdom and helps dispel fear that will naturally occur in situations that I am all too familiar with. Peter Edwards is an Accident Investigation Officer with the Gloucestershire Constabulary, dealing with the specialist investigation of serious and fatal road traffic accidents, a post he has held for the past 20 years. He has 28 years service in the Force and has been a Traffic Officer for 24 years. As a result of his work he has a wide experience of dealings with various Coroner's Districts and inquests. His wife, Rachel, is the C. R. Y. representative for Gloucestershire. In June 1997, their son Alexander, who was 12 years of age, collapsed during a cricket match at school and died a week later as a result of dilated cardiomyopathy. 6
|
Cardiac Risk in the Young
Issue 36
The Bereavement Support Day, June 2003 CRY
CRY
Professor Bill McKenna - how it is possible for an apparently fit and healthy person to be harbouring a potentialy lethal cardiac abnormality.
Workshop facilitators (back l-r) Hazel Greig-Midlane (CHF), Granville Staff, Doreen Harley, Gloria Moss, Julia Cayne, Margy Al-Chalabi, Amanda Edgar, Jan Smith (middle l-r) Costadina Shackleton, Keely Ashley, Caroline Gard, Maralyn Bowen (front) Tony Hiill. (Paulette Smith not in picture).
Dr Sanjay Sharma - the perspective of the cardiologist in dealing with families of victims of young sudden cardiac death.
Dr Elijah Behr - why young sudden cardiac death cannot always be identified at post-mortem.
Jim and Barbara Holland made a very generous donation of ÂŁ1,000 in memory of their son Philip after attending the CRY Bereavement Support Day. Philip died suddenly at the age of 23 of WPW, just after Christmas 2002, during the morning service at his local church. Issue 36
Julia Cayne - Emotional learning and bereavement Cardiac Risk in the Young
|
7
CRY
My Great North Run - September 2003 by Julie Hatton and Granville Staff
CRY
Sunday morning, 4-15 am, the alarm wakens me from a deep sleep. Goodness gracious, there are two 4 o' clocks in the same day. We set off to Newcastle at about 5 - 00 am, the journey taking about 3 hours. Then, here we are at the start . watching all the different runners and their families gearing themselves up, wearing all sorts of costumes, fairies, cavemen, bunnies, etc and Andy and myself in 2 red hearts. Is this a good idea I ask myself. We get talking to some runners at the start and they ask what we are and why we are running in the heart costumes. We explain about CRY and its aims and what happened to David when one of them gives me two pound to help swell the coffers saying she will do without a sandwich at the end. The gun is fired and 47,000 runners set off running for all kinds of charities, we see other CRY runners sporting their red T - shirts and running vests. In the melee, I lose Andy and decide to plod on ahead by myself. All along the route, people are shouting my name and " come on CRY ". Children were getting me mixed up with cherries, strawberries but what the hell, at least they are helping to spur me on. By the time, I got to 5 miles, the heart was getting uncomfortable and I was very warm inside to say the least. At about 7 miles, a tap on my shoulder and it was a guy called John, also running in a heart. He had already passed the time of day with Andy reassuring me that he was still plodding along somewhere behind. We chatted for a while before he strode ahead looking good. As I approached the finish, my thoughts drift back to September 1994, when David and I did the Great North Run together not knowing that 3 months after he would no longer be with us. This was taken of us just after finishing the Great I finish in just over 2 hours, absolutely shattered but proud and pleased that we had decided to do it dressed as we were hopefully North Run in memory of Leon. helping to raise the It was much harder that I’d expected. First time I’d profile of CRY and ever ran a half marathon and I had been training for bringing it's name to the forefront of people about 3 months on Redcar beach. who before hadn't I did enjoy it but was glad when I passed the finish- heard of us. ing line. I pick up my medal and My friend kept me going, and we managed to keep goody bag, wait for jogging all the way! With a finishing time of 2 hours Andy to finish and then 20 minutes which we were very pleased about. The we head for the pub last 3 miles were the worst, seemed to go on forev- and 2 pints of well earned Guinness. er. I thought of my little Leon all the way around. I kept Granville Staff and Andy Storey saying “come on son give me some strength!” In all they raised almost £500 in memoWe raised £444.50. ry of David Julie Hatton 8
|
Cardiac Risk in the Young
Issue 36
CRY
CRY
Julie’s Interview with QT Kanga (and CRYTeddy) What do you do for CRY? CRYTeddy and I are just having fun raising awareness of Sudden Death Syndrome (SDS) by visiting CRY families to try and draw attention in local communities, to these conditions. 2. Why have you come to England Kanga? Well apart from the fact that they have the best looking teddy bears in the world I am also here to help CRYTeddy to highlight the MEP's campaign with the World Health Organisation to get a worldwide term recognised, so that all the countries in the world are using the same title. It is only if we can find out the scale of the problem worldwide that we can have an international response to dealing with it. When they did this with Sudden Infant Death Syndrome deaths fell by 70% in 10 years. 3 What is SADS Australia? SADS Australia is an organisation that was started by Julie Foley to raise awareness of Long QT Syndrome (that is why they call me Cutie Kanga) and also other heart conditions, that if not identified, can kill. 4. Do you enjoy your work with CRY and if so, why? I love being over here working with CRY. I have never had such an amazing welcome anywhere in the world that I have visited so far. 5. Are you keeping a diary like I do when I go on holiday? The families we stay with are filling in our diary which will be published on our CRY website page www.c-r-y.org.uk 6. Who will be looking after you here? CRYTeddy is looking after me while I am in the UK and, of course, the families that we stay with are looking after us! 7. Would you like to stay with me? (My favourite toys are a bear and a koala)! We would LOVE to come and stay with you and meet all your toy friends and your schoolfriends and I would especially please like you to take me to meet my hero Harry Potter. 8. Are you enjoying being here in England or is it much too cold? We have been too busy to get cold! Anyway we have our travelbag to sneak in and wrap up if it gets chilly in the winter months. 8. Where have you been so far on your travels here? We started in Scotland with Scottish MEP Catherine Stihler who is telling the Scottish Parliament all about SDS and we had our photos taken in Fife with Catherine and Andy and Maggie Tait; then we had a fur-raising trip from Lands End to John O'Groats with the Goodrich-Meeks in their Bionic Bus; then we met the Fox family in Suffolk and went up in Robi Fox's police helicopter; then off to North Wales to Doreen Harley's screening event and to meet her MP friends; then to Lanzarote as 53 members of the McCollin family were meeting in Well apart from the fact that they have memory of Scott who died there last year - and we are going for the best looking teddy bears in the world Christmas to Mr & Mrs Byford Fox who are taking us on a Mediterranean Cunard Cruise and we have been told we might even I am also here to help CRYTeddy to highbe invited to the Captain's Cocktail party! In January we are booked in light the MEP's campaign with the World to stay with the Howell's, to be mascots to the mascots at the West Health Organisation to get a worldwide Ham and Sheffield United Football match. term recognised, so that all the countries And that is just the beginning.......... in the world are using the same title.
How much more excitement could a little QT Kanga want……….. Issue 36
Cardiac Risk in the Young
|
9
CRY
CRY
WORDSEARCH Can you find these words? TEDDY KANGA MASCOT AUSTRALIA MARSUPIAL BEAR CUDDLY TEAM TRAVEL
T K T V J T K T H M
B E A R O W A I N A
A M D C S J N A T R
L O S D U I G W E S
Z A C L Y D A Z A U
M A S S C A T I M P
R K N Q W U E X E I
X A U S T R A L I A
E B L E V A R T F L
O U P C U D D L Y G
ONLY JOKING by Julie WHAT DO YOU CALL A TEDDY BEAR'S FAVOURIT DRINK? GINGER BEAR! WHERE DO KANGAROOS GO FOR AN EYE TEST? TO THE HOPTICIAN ! WHAT IS A KANGAROO'S FAVOURITE COWBOY HERO? HOPALONG CASSIDY ! WHAT DO YOU GET IF YOU CROSS A BEAR WITH A KANGAROO? A FUR COAT WITH BIG POCKETS. WHAT DO YOU GET IF YOU CROSS A SHEEP WITH A KANGAROO? A WOOLLY JUMPER. WHAT IS A KANGAROO'S FAVOURITE PLAYGROUND GAME? HOPSCOTCH ! WHAT DO YOU GET IF YOU CROSS A TEDDY BEAR WITH A SKUNK? WINNIE THE POOH ! WHY DID THE KANGAROO SCOLD HER BABY? FOR EATING BISCUITS IN BED. 10 |
Cardiac Risk in the Young
Issue 36
CRY
CRY
In memory of Therese Field Step back in time 8th March 2003 "My dance school the 'Stargazers' put on a song and dance show at the Theatre Royal, Margate on 8th March 2003 to raise money for CRY. It was a huge success and we raised £2225.00. The show consisted of songs and dances from every decade over the last century. We had a variety of numbers such as the Can Can, Sixties medley, Charleston and Kylie Minogue. The children worked extremely hard and enjoyed the experience immensely. There were over 60 people involved and they performed in front of a full house of 360 people. We are very pleased to raise the above sum and it was also great to keep the memory of my sister Therese alive. She died on April 9th 1997 and would have been 22 this year." Tara Field
In memory of Michael Looker
In memory of Daniel Lumm Pupils and staff at Teign School, Kingsteignton, Devon, organised 2 coach trips and donated the proceeds of £150 to CRY
In memory of Joe Spivey "Just before the new year one of our talented and well respected former students, Joe Spivey, lost his life as the result of a heart condition. Joe was a gifted sportsman and otherwise healthy individual who will be deeply missed by his friends. At our recent sports reunion dinner we decided to hold a fundraising quiz in memory of Joe and I am delighted to pass on the proceeds of our efforts to you to put to good use in the prevention and awareness of heart disease in the young" Carl Atherton, Head of Sport. Carl and his team raised £44.
Vera Looker and her Grand-daughter Sofaya at the Victoria swimming centre where they did their sponsored swim and raised £120 Issue 36
Steve Hargreaves, M Lowery and A Rhodes, all fellow students of Joe's, have made donations in his memory. At a time which was difficult for them, with exam pressures, they still managed to raise £256.75 Cardiac Risk in the Young
|
11
CRY
CRY
In memory of John Parker Pupils and staff from Radcliffe on Trent Junior School have made a donation in lieu of flowers of £70.
In memory of David Harry Miss Mel Shipley recently sent in, on behalf of the Little Rowans, £323 for CRY which was raised by Little Rowan’s playgroup and toddler group holding a Summer Fayre . "To CRY, I am writing to tell you about the money we raised for your charity. I am 11 years old and go to Ermington Primary School. At Christmas, I and some others raised £44 for your charity, between then we have raised another £35. I hope that you will be able to buy more facilities and save lots of people with the money" Stephanie Hutchings
The sixth form pupils at the Crossley Heath School, in Halifax, organised a music concert for CRY. Everyone really enjoyed themselves and raised £205.95
"On the 14th February, St Ninian's High School on the Isle of Man, held a 'Glad Rags Day', where students were allowed to wear non-uniform for the price of one pound. With the money raised from the event and considering the event was held on Valentines Day, the Student Council decided to split the donation equally between CRY and a local heart organisation on the island. We hope that the money will be of use to you as we feel that your organisation is relevant and beneficial to young people with cardiac problems" David Ogle £521 was donated to CRY
In memory of Andy Gard "I write to tell you of a sponsored Hockey Juggle that a few of our Year 6's participated in. This was part of a Primary School Hockey Festival organised by Jamie Oxley from the Plymouth Hockey Development Group. The children were timed to see how many times they could bounce a hockey ball on their stick in 1 minute. Most children managed around 150! As a result of this hockey juggle, the children raised £68.15" Miss J Newnham
CRY Talent Show In memory of Lewis Marsh On Tuesday 18th February 2003 myself and a few of my friends (special thanks to Michaela Parker) held a talent show to raise money for the Lewis Marsh Fund, which is part of the charity CRY. Twenty-one people aged between 7-11 took part, and over seventy people came to watch the event.We had three judges, Mrs Pigeon (Head of Governors), Mrs Crook and Miss Evans (Teachers), who sat in the front row who used white boards, to mark each perfomance out of ten. Then those three numbers were added up to give each performer a total. There was a first, second and third place, and a prize for the performers who came first and second. All three winners also received a certificate.There was a range of acts from poem recitals, dancers, singers and a variety of musical intrument acts. The standard was very high, but we had to have a winner, and the results were as follows. In first place: Elouise Coutts, who sang the famous Elvis song “In the Ghetto”. Her prize was £5. In second place: Conor Wilson, who played the drums. His prize was a large box of chocolates. In third place: Eloise Limberger and Kiaya Brace, who sang and danced a number called “Underneath your clothes”. All contestants were given sweets at the end of the event. The amount raised for the Talent Show for the Lewis Marsh fund was £96.06! - this came from entrants fees, tickets, raffle and refreshments. I would like to thank my school, Uplands Primary in Sandhurst, especially the Headmistress, Miss Warwick, who gave me her full support, and for allowing me to use the school hall, and for the photo-copying. Olivia Horrox Olivia and Michaela with microphone surrounded by contestants
12
|
Cardiac Risk in the Young
Olivia with microphone
l to r Elouise Limberger & Kia Brace (3rd), Elouise Coutts (1st), Conor Wilson (2nd)
Issue 36
CRY
CRY
In memory of Andy Gard - Carrots for CRY In February 2003 the Emmanuel Church Drama Group of Walton-on-Naze, under the direction of Lyn Mann, began to rehearse for their musical named "Carrots" set in London during the Victorian era in 1860. It relates Dr Thomas Barnardo's earliest encounters with a group of penniless orphans. Through the play Barnardo slowing gains the orphans' trust and coaxes them with food and to attend the ragged school that he had set up in the area. With the help of his partner, Syrie, they managed to establish schools and homes over the country. With a company of 35, including 23 children, we gave four performances. A raffle was also held. "Entrance is free, refreshments are free but we do charge you to leave!" is Auntie Lyn's motto! A sum of ÂŁ1,000 was donated to CRY. This was my 5th production with the Emmanuel Drama Group and it was great to know Carrots was its second production in aid of CRY. Julie Tanner (Kids For CRY)
Issue 36
Cardiac Risk in the Young
|
13
Our fundraisers CRY
CRY
In June Anna Boyson and David Watt completed a 'Tandem Skydive' They raised £960 for CRY.
"Michael Cressey, (Bradley's Brother-in-law, to be) attended a Housing Associations Bar-B-Q, at Clarendon Gate Ottershaw, and said that he would have his head shaved if everyone put money into a bucket. He raised £332.40, which I think’s fantastic." Eddie Farrow Karen Irwin Bradley has an AICD implant fitted as he ran the has Brugada Syndrome, he is also a Liverpool 3 firefighters from Essex completed a charity Cyle Ride covering member of the CRY Surgery Supporters Ladies 10K 400 miles in 4 days and raised £625. Seen here with the AUDI Club. for CRY and Mountain bike on loan from AUDI dealership for the event.
raised £210 Staff at Huntsman Petrochemicals, "A Tae Kwon Do open evening was held where we invited memRedcar, achieved environmental, safety bers of the public to join the Garston Tae Kwon Do in a training session" and health targets, and were asked to Writes David Sealey (Master: 4th Dan Blackbelt) nominate a charity for a Michael Jones took part in a 20 mile Charity Walk. Along the donation. CRY was chosen Thames tow path, which started at Hampton Court and finished Bromley Common and received £100. Methodist Church made in Balham, South London. He raised £500. Mrs F Merz raffled a pair of a £200 donation to CRY. Sharon Bills Deborah Keys successfully David Wimbledon tickets at a private func- undertook a completed the Dartford Half Seaman made a parachute jump for tion, she was assisted by Jane Tandem Skydive Marathon and raised £190. CRY and raised £100. Griffiths, who also ran the London for CRY and ‘A year ago a very popular customer marathon for CRY. Together they raised £105. of ours died in our pub, from a heart helped to raise £170. Karen Irwin ran attack at the relatively young age of 58. Mr Dennis R Brown made a in the Liverpool He was actually playing pool at the time donation to CRY, which was Ladies 10k for of his collapse. Michael Kent, nicknamed ‘Winkle’ is sorely missed by matched in the B.P Pensioners CRY and everyone who knew him. His family requested no flowers at his funeral, Scheme making £200 raised £210. instead asking for donations to CRY. A goodly sum was raised I Dr Sanjay Sharma, CRY's believe. We (my husband, myself and our regulars) decided to have a Trustee, stood in for another Thomas pool competition consultant, he refused a fee Burgess, Sophie each year in aid but asked for this to be made Law and of the charity and as a donation to CRY which Jonathon Flavell all undertook a this year was the came to £150. first. We raised Tandem £297. Next year Skydive for we hope it will be CRY. They raised £330. a lot more.’ Mary Shaw "Myself and a few colleagues did a sponsored walk, by walking 25 Wokingham West Forest miles, in a day, doing the Goyte Townswoman's Guild. Stephanie Cann is a member of the guild, Valley, in the Peak District." she has been telling her colChristine Spencer Christine and her team decided leagues about the work of CRY. to split their donation with 2 char- They decided to make us one of Jennie Bromley (left) ran in the Liverpool Ladies 10k. Her time was 1hr 10mins and she raised their charities of the year, and ities and CRY received £482. £794.27 made a donation of £870.
14
|
Cardiac Risk in the Young
Issue 36
Our fundraisers CRY
CRY
In memory of Ewan James Bellamy Judie Bellamy has kindly donated £100 to CRY in memory of her son Ewan who died suddenly on 12th April 2003
In memory of Mike Scott Jane Hellowell co-ordinates The Ryedale Millennium Volunteers Project, which is linked to Lady Lumley's school, where Mike used to go. 2 of her volunteers handmade some Valentine's Day cards and sold them. They have done really well and raised £150.88. Lady Lumley’s is relentless in their support of CRY and went on to raise a further £250 in Mike’s memory.
In memory of Andrew Ball “Another glorious day was had by all at the Weary Traveller on Sunday 24th August 2003. This was the 7th Annual Kiddiminster Flat Green Bowling Competition in memory of Roy and Gill Ball’s son Andrew. In May the Weary Traveller Charity Bottle holding over £700 was stolen from behind the bar. After that heartache Kathy and all her staff realised that to beat last year's figure of £1,050 was going to be hard work. The raffle and B-B-Q raised nearly £400. (Sheila Clarke won a bottle of Southern Comfort and Gill won a bottle of Bells). Balloons and bowling raised record levels. So the sum of £1,080 not only beat last year's previous best, but was an unbelievable amount in such a short time. With the weather being so grand Kathy even ran out of beer glasses. Special thanks to Kathy, the Bar staff, Lorraine Lojke for the raffle and Rob Jones for the Bar-b-Que.” Roy Ball
Catherine Turner, Helena Symes, Robert Littlejohn and Colin Hughes, with Tony Barker’s mother on the fence Issue 36
Cardiac Risk in the Young
|
15
Our fundraisers CRY
CRY
In memory of Colin Doyle The 4th Colin Doyle Memorial 5-a-side Tournament was held at the Slough Post Office Sports & Social Club on 26th July 2003. "As per last year the weather was very warm, as the 12 teams took to the field of play to do battle in the football tournament. Once again this was coupled with the usual 'distractions' for the families and non-footballers of Tombola, Bouncy castle, Raffle, Hot food and of course the Bar!! At last years event we managed to get the local radio station, STAR FM, to advertise the event and CRY’s cause; along with some local press coverage from the Slough Express and raised a fantastic £1,835, with a further £1,835 donated by Camelot through matched giving, raising the total to £3,670. Unfortunately, this year's event was not as well supported as previous years, however, the good news is that we still managed to raise a satisfying £750, and this combined with the generous donation of £500 from Annemarie's employers, Scottish & Southern June Jennings, Alison Doyle, Georgina Doyle, Josh Doyle, Simon Mitchell and Richard Hayes at last years 5-a-side tour- Energy, made a grand total of £1,250." Richard Haynes nament in memory of Colin Doyle
In memory of David Elliott BAE Systems organised a 3 peaks challenge at Kielder in Northumberland. This was an inter-site challenge which covered some 26 miles of forestry track and rugged hills. "The team entered from our site won the David Elliot Memorial Trophy which means we will be hosting the event again next year" Joanne Beacham. They raised £310.
In memory of Nicholas Thorne Ros and the prime time friends at LA Fitness in Sydenham made a donation of £200.
In memory of Andy Gard The University of Exeter Guild of Students held their RAG Week in the summer. This was made up of weird and wonderful ways of fundraising, the students made a record breaking amount this year which was divided between a number of charities and CRY was awarded £1700. Special thanks to JJ, Jess, Jim and the RAG Committee. 16
|
Cardiac Risk in the Young
Issue 36
Our fundraisers CRY
CRY
In memory of Nicholas Sketchley Babs and Peter (Nicholas's Mum and Dad) celebrated their Pearl Wedding Anniversary by inviting friends and family to their house. They received several donations in Nicholas's memory totalling £400 "All these contributions are sent in memory of our eldest son, Nicholas, who died on 30th May 2001, aged just 27years and 2 days. Nick was on his regular exercise run through the royal park at Bushey, Middlesex, accompanied by his faithful dog. Nick was apparently fit, an active public servant and former member of the Territorial Army - used to physical exercise. He was married and they had a young daughter, then fourteen months old. He seemed to collapse without any warning or apparent distress and was found apparently dead by other park users, who went to his aid. Needless to say, his mother and I miss him every day" Peter Sketchley
In memory of Adrian Hawkins Pam (Adrian's mum) has sent us a donation of £100 Adrian was a cyclist, just short listed for the Barcelona Olympics Cycling Squad, and died two weeks later at the age of 22, immediately after winning a major race.
In memory of Suzanne Taylor "On 18th May Pete Maddock ran the Chester half marathon in 1hr.44secs and through sponsors we raised £420. Pete now says that he would like to run the London Marathon for CRY" "On bank holiday 26th May we held our annual cricket match Staff V Bosses at the Royal Mail Chester. We raised money by having a raffle, most of the prizes were donated by the bosses. David and myself did a BBQ. It was actually a beautiful and enjoyable day - with no rain!" "Most of the money has been raised by my colleagues at the Royal mail, Chester in memory of my daughter Suzanne Taylor" Following the success of the charity cricket match and sponsored run Gerard Lennon decided to do a “sponsored slim”. It took him a couple of months, but after his target date he had lost 15 kilos, and eventually managed to raise £235. He said that the diet was so much easier to stick to knowing he had the incentive to raise money for CRY. Beryl Ewing Almost there! No need to tell you which one is Pete
Well done to Pete Issue 36
David cooking up sausages!
Cricket Match staff v bosses Cardiac Risk in the Young
|
17
Our fundraisers CRY
CRY
In memory of Madeleine Mulcahey Madeleine was the only daughter of Hugh and Jane Mulcahey. She was a fit, active and vivacious child. Madeleine loved to sing songs, to paint and to play with her toy kitchen. Most of all she loved to go for a walk in the wind and the rain and to name all the plants and animals she could find. Before her death Madeleine had hardly ever been unwell. It was unusual for her to have as much as a runny nose. A week before she died her parents had their annual Christmas party. Madeleine, who had a cold, was a little quieter than usual but was, as usual, a source of delight to friends and relatives. Concerned about her cold, and at the risk of being seen as a crank, Jane took Madeleine to the doctor three times in the month before she died. The three doctors who examined her all concluded that she had a cold and was otherwise fine. On the 16 December 2000 Madeleine developed breathing difficulties and was taken to the local District Hospital. She was treated for an asthma attack. Following treatment with steroids and drugs to assist her breathing she died of heart failure in the early hours of 17 December.No one could explain Madeleine's sudden death. A post mortem eventually revealed that the cause of death was dilated cardiomyopathy. Despite months of tests none of the many consultants involved in her case were able to determine why she had this condition. Judith Hulme one of the owners of the nursery that Madeleine attended held a fundraising event in her memory and raised £200. Last year £118 was donated to CRY after a wedding in which there was a pot for the person who guessed how long the speeches would be. It was Hugh who guessed correctly and when the money was given to the table they agreed that it should go towards a worthy cause. Hugh explained the cause and how his own daughter died from an undetected heart condition. Earlier in the year Hugh and Jane made a donation of £200 to set up Madeleine’s memorial fund.
Guy Addison ran the London Marathon in memory of Madeleine and raised over £3,500
In memory of Laura Fox Kate and Robi sent us over 200 used mobile phones. We recycled them and received £647.10 in memory of Laura
In memory of Ian Bowen Neil Duffy is a policeman and his father works with Kenny. Neil took part in the Thirsk 10 mile road run and raised £170 in memory of Ian.
In memory of Kevin Sayer Once again Loddon United Football Club held a memorial match in Kevin's memory and raised £350. A further £100 was donated in memory of Kevin's nan Jessie Sayer.
In memory of Lisa Jane Browne Doreen Harley (Lisa's Mum) had a family article published in Woman magazine. She donated the fee of £300 to CRY Issue 36
Cardiac Risk in the Young
|
19
Our Fundraisers CRY
CRY
In memory of Christine Goldbourn Christine used to work at Martin Dannell & Co in Waltham Abbey. Her colleagues held a collection for her and £400 was raised
In memory of Neil Wickers and David Staff Alan and Edith Bury from Darwen recently celebrated their Golden Wedding Anniversary. They asked for donations to CRY instead of presents and raised £250. The Staff/Wickers fundraising team held a Bank Holiday Tombola which raised £218.20. Brian Taylor (Neil's Uncle & Irene's Brother) ran in the 10k Blackpool road race and received a great £310 in sponsorship with donations from P Whittle at their Screening, and Nell at The Academy with her Collecting Box they raised a total of £562.64 in memory of Neil and David. The Blackburn and Darwen Mayors Charity Fund has donated £500 to CRY in memory of David and Neil. This year the Mayor concentrated on the Young and Old of the Borough which helped win money for the fund. Janet from the Academy held a raffle at their screening in June, Malcolm Royle made another donation, with further donations the total raised was £185.
In memory of Gareth McDonald Court St David No 211 The Independent Order of Foresters have sent in £1355.91. Plus £50.00 from the Ladies Skittles Team!
In memory of Bruce Smith Bruce died on 26th March 2003 of Sudden Death Syndrome. A collection made by neighbours in his memory which raised £102.52 for CRY.
In memory of Barbara Ann Whealan Sheila Clarke held a stall at the Summer Fayre and with a donation from Harry and Elizabeth £125 was raised.
In memory of Dawn and Nadia "A collection was held in memory of Dawn and Nadia, daughter and granddaughter, who both died with Sudden Adult Death Syndrome" Diane and Chris Tomlinson. £200 was donated
In memory of John Searle Fox "David died on Sept 16th 2002. This donation was as a result of the moneyback scheme run by Sainsburys in Kempston Bedfordshire and was as a result of a friend of mine approaching management to consider CRY as one of their charities" Celia Byford-Fox They donated £125.77 20
|
Cardiac Risk in the Young
Issue 36
Our Fundraisers CRY
CRY
In memory of Shaun Palmer "We lost our son Shaun on 1st March 2002 from cardiomyopathy, as yet we don't know which one, but we will be coming to Professor McKenna's clinic this year where we will have things explained to us properly as our own doctors didn't have the knowledge of this condition to explain it. We will also have our daughter Keelie screened. When we lost Shaun who was 16 years old it felt like the bottom had fallen out of our world, he was so happy on that fatal day, I can still picture him laughing at me as he rode off on his bike, but just 15 minuites later there was a knock on my door and my son was gone forever. CRY you have given us something positive to focus on, isn't it about time every child was screened automatically for this condition instead of these young lives being taken unnecessarily. Keep up the fantastic work you do at CRY and one day your message will reach everyone. With heartfelt thanks and love from Mandy, Steve & Keelie Palmer.” “Lights go on for Shaun” this year raised just under £700 A memorial service was held for Shaun, where about 100 people came and raised £400 Tracie Burrie came to the service as she had lost her brother Patrick from the same condition. She made the Palmer family aware of CRY and received the cheque on CRY's behalf. Mandy (Shaun's mum) has been busy fundraising. Unfortunately she had to cancel her 'Millionaires Evening', but the companies that she had already approached still wanted to donate to CRY and £510 was raised in Shaun's memory.
In memory of Matthew Wilkin “Matthew came in on Sunday morning at 12.30, said goodnight and went to bed. He was due to defend his Hillingdon Junior Golf Title later that day. Michael went to wake him up at about 10.30am; he had died in his sleep at the age of 16. He had no health problems whatsoever and no reason has been found for his premature death. Matthew had completed his GCSEs last summer and was due to start at a Golf Academy in Gloucestershire on 18th September; instead we held his funeral. He was a very charming boy who could interact with people of all ages which sadly became only too evident by the large number that came to Matthew's funeral and the condolences expressed. We miss him very much.” Michael, Deborah, Rebecca and Andrew. A collection was made at Matthew's funeral. Family and friends donated £405
In memory of Patrick Fearon "Our Boat Party was held on Saturday 19th July and was attended by 130 revellers. After we provided the guests with lollipops and vodka jellies our boat departed at 8pm from Putney Pier in West London and cruised eastwards into central London. Many people during the early part of the night spent time on the outside deck enjoying the unique view of London and the thunderstorm that raged somewhere over the south of the city! Meanwhile inside the boat two friends and I provided a rather eclectic soundtrack to all the fun. During the evening the music segued from 1950's rock'n'roll, to Film Soundtracks, to modern rock and dance sounds and by the time we returned to Putney pier at midnight, the crowd had thoroughly enjoyed (and exhausted) themselves. The partygoers were reluctant to leave, but all good things come to an end, and they did to the Beach Boys Good Vibrations." Ben Dunning. Ben’s sister’s boyfriend was Patrick who died of an undetected heart problem in April 2001.Ben and friends raised £261.38 Issue 36
Cardiac Risk in the Young
|
21
Our Fundraisers CRY
CRY
In memory of Leon Manners The Collecting box from Finlays Newsagents has been emptied, with a donation to Leon's fund of £150. The annual Boxing Day Dip, where people are sponsored to go into The North Sea raised a body numbing £526. On the 4th April Julie Hatton (Leon's Mum) and her helpers held an evening of clairvoyance. They also held a raffle and had a Tombola stall. Special thanks to medium Jackie Wright for giving up her time and making it a great night. Jackie even managed to convince some of Julie's sceptical friends! An amazing £706 was raised. A Fun Day was held at the Beacon Pub in May with a Tombolla, Raffle, Cake and Plant stall. Thank you to Michelle and Ian, Landlord and Lady of the Beacon Pub, kitchen staff (Diane and Marie, Sabrina) helpers Jackie, Aline, Janet and everyone else who helped to raise the £216.
In memory of Anthony Lancaster “On Wednesday evening the 24th September 2003 Hindley and Hindley Green Church women’s section held their Women’s Autumn Project. This year at St John’s Methodist Church, we were entertained by the Ladies Choir from Bamfurlong Methodist Church. A Bring and Buy and Donation from each Ladies Group. It was a very good evening enjoyed by all. Proceeds are always donated to a cause chosen by each Church in turn. This year St John’s chose CRY. One of our Ladies had a Grandson who was a victim of this last year. It is hoped that more people will become aware of this Cruel Cause of Death in the Young. The final total raised was £510 in memory of Anthony Lancaster who died in his sleep on 13th July 2002. A very good effort and many thanks to all who supported the PROJECT to try and bring some comfort and help to others who suffer this pain and loss.” Mrs Smith
In memory of Aaron Lundy Friends and family of Aaron ran in the Belfast Marathon and raised over £1000 for CRY
22
|
Cardiac Risk in the Young
Issue 36
In memory of Mandi Blake CRY
CRY
Mandi's Mum, Margo Wright has held her first fundraiser. The night started with Margo telling everyone about CRY. Sarah is Margo's Grandaughter, she started the show off on her own by singing 'Somewhere over the Rainbow' which was Mandi's favourite song. There wasn't a dry eye in the house during this number. Then Breeze an all girl group started their show with a very impressive ABBA routine which had everyone up on the dance floor, and once they were up they didn't stop! The night was a great success with 300 people turning up. There were many great raffle prizes and 350 tickets were sold. The night raised ÂŁ1329.00 in memory of Mandi seen here with Ellie. Many thanks to Lisa Cairnfe, the photographer for the event
Mandi’s youngest son Luke with Leroy the Lion Margo introducing the evening
Sarah started the show
The girls wearing their CRY sashes
The group BREEZE
ABBA eat your heart out
Everyone went wild to the ABBA medley
Margo and her chocoholic husband at the end of the evening
ABBA always gets people dancing
Over 300 people turned up on the night 24
The group BREEZE and Leroy
|
Cardiac Risk in the Young
The girls finished the show in their own style Issue 36
Cycleothon in memory of Ben Thorn CRY
CRY
" The SRC Ben Thorn Cycleothon took place on Sunday 15th September 2002, and was a great success. Over 80 riders took part, and later in the day there was a barbecue for family and friends, which carried on till the early evening with live music and plenty of food and drink, very generously supplied by Dave and Alison Parker at their home in High Salvington. A raffle and an auction of a signed football and two framed prints of racing car drivers brought in even more funds. SRC is Dave`s recycling company and every two years Dave and Alison organise a charity bike ride, as they are friends of ours and knew Ben. They decided this year to give all the funds to CRY. We would like to send a big thank you to Dave and Alison for all their help in raising so much money in memory of our son Ben." Veronica Thorn The route was from Guildford to Brambey via Downs Link bridleway and up over the back of Steyning to Parkers at High Salvington. Approximately 40 gentle miles - almost traffic free. Transport was arranged bikes and cyclists leaving High Salvington at 7.30 hrs sharp! Extra posterior padding was highly recommended to protect the lower parts and together with some form of lubricant bananas - old engine oil etc! So far the Cycleothon has raised £4,633.06. Veronica Thorn (Ben’s Mum) has kindly sent in £170.00 for donations collected in memory of her father Mr Barry Hamlet.
Issue 36
Cardiac Risk in the Young
|
25
In memory of Brian Southern CRY
CRY
A Charity Night was held in memory of Brian Southern who collapsed & died whilst out jogging age 34 two years ago he was a strong fit & healthy young man, very popular with a generous and caring nature. He ran the G North Run & supported charities for his sister who has Downs Syndrome & for his mum who he lost to cancer at only 48. He left his partner Alison McCabe & two daughters Jodi age 10 & Louise age 16. They & his family were devastated by his sudden death and feelings are still very raw in coming to terms with their tragic loss two years on. Alison wanted to do something special on the first anniversary of Brian's death - in the run up she organised 2 sponsored walks & walked all around Liverpool City Centre with Collection Boxes approached shops, companies and businesses and various other fundraising projects. Fantastic donations for raffle prizes were received - his work colleagues at United Utilities of Warrington where Brian worked gave a TV set & Personal Stereo. Stoves £50 M&S voucher, Jemelli Health & Beauty Salon £50 voucher (where Alison works) She received many other excellent prizes & donations from local people & businesses. The venue was at St Aidens Social Club & Alison was overcome at their support & generosity, their in-house caterer donated the buffet which would have cost them over £800 The evening was a fantastic success with Brian's brother John having his head shaved in front of everyone and was even persuaded to have his eyebrows shaved off as well by a local barber who also donated his services D J Andy put the icing on the cake - he not only gave his services for free but got involved in getting everyone participating in lots of fun & games & an extra £1700 was raised due to his fantastic efforts on the night. Liverpool FC's then captain Sammy Hypia donated a signed shirt - it was won by a work colleague of Brian's (Brian & daughter Jodi age 10 were devoted LFC fans) He kindly gave the shirt to Jodi which is now her most prized possession. Alison & her daughters have been overwhelmed with all the help and support they have received from Family, Friends, Neighbours, Brian's Colleagues & Local Businesses. She sends her heartfelt thanks to everyone involved. A cheque for £2570 was presented to June Boulton (representing CRY) 26
|
Cardiac Risk in the Young
Issue 36
In memory of Thomas Lloyd CRY
CRY
THE CHARITY EVENT TO RAISE MONEY FOR CRY IN HONOUR OF THOMAS LLOYD WHO SADLY PASSED AWAY OF SADS ON 12 JUNE 2003 “Saturday, 30 August 2003, the night to celebrate the life of Thomas Lloyd and raise as much money for CRY as possible. The evening was more successful than we could have ever imagined, over 300 tickets were sold, there was plenty of food and the drinks were flowing, the atmosphere was almost as if Tom was in the room putting his characteristics into every person in that hall. More importantly his art work was recognised. They say that a great artist doesn't become famous until they have passed this life, well that has certainly been the case with Tom. Although everyone that knew him was aware of his greatest passion, we do not think that anyone realised how talented he was and most of the guests went home with a little piece of Tom to always treasure and probably felt good that they had also contributed to a good cause. The early hours of 12 June 2003 was the most tragic this family has ever encountered, our wonderful Tom lost his life to Sudden Adult Death Syndrome, a condition that this family had never even heard of and there are a lot of us. Tom was the youngest of seven children born to Irish parents in Paddington North West London in 1966 the year that England won the world cup, something that Tom was really proud of, as he was a great football fan supporting Queens Park Rangers his whole life. Although he wasn't married and didn't have any children of his own, family was extremely important to him. Anyone who knew Tom was aware that he could light up a room with his laughter, so as a family we felt compelled to celebrate what a fantastic life he led, not the fact that he has been taken away from us so young. He was only 36 but in his short life he managed to achieve so much, not in the way of materialistic value, he was extremely hard working and a very successful driving instructor working for BSM for over ten years. We will never be able to get over losing Tom and feel like we could write a whole book on his life as he always had so many stories to tell, some people could live to see 100 and never truly love and laugh as Tom did. CRY has been a great source of help to us and we are delighted to have raised £2,112 and would like to thank everyone that was involved in helping because the event could not have gone ahead without their generosity.” Helen Roche (Tom's niece aged 24 yrs)
28
|
Cardiac Risk in the Young
Issue 36
In memory of Lewis Marsh CRY
CRY
"Having become the Master of the Wellesley Lodge No 1899 last year I had no hesitation in announcing one of my charities would be CRY. I was very saddened at the sudden death of Lewis Marsh and when his mother Gill became so involved with this worthwhile charity it was a perfect opportunity for freemasonary to help. Please keep up all your good work and I hope this donation will aid your endeavours". Godfrey Bowers They donated £800. "Our friends are always finding interesting ways of raising funds. Our latest fundraising has been made up from Wentworth Golf Club, Sandhurst School, Yateley Ladies Circle, Sandhurst Football Club and selling sweets in the offices to name several of their ingenious ides. How fortunate I am to have such caring folk always giving their support." Forest School near Reading held a football tournament. At the Gillian Marsh initiative of Matthew Walker, who was a friend of Lewis's tennis They have raised an incredible £2000 in memory club, CRY received a fabulous donation of £1000 of Lewis. STARLETS SHINE IN LEWIS MARSH CHARITY MATCH Budding Beckhams and future Figos took part in a football tournament in Sandhurst to raise £500 for charity last weekend. More than 100 clubs from across the region featuring players aged 7 to 16 supported the sixth Lewis Marsh Pre-Season Friendly Tournament, organised by Sandhurst Town Boys and Girls Football Club. The competition, which took place at the Sandhurst Memorial Park off Yorktown Road, was named after former Sandhurst player Lewis Marsh who died tragically in Clockwise above: FC Bracknell (light blue) v Binfield. March 1998 from a heart condition aged just 13. Bracknell Jets (blue) v Pinewood ‘A’, Finchampstead (red) v Bracknell Celtic, and Sandhurst (red) v Whiteknights Pictures by Steven Peskett
Lewis's death prompted his mother Jill and family friend Sally Reid to set up the Lewis Marsh Fund in his memory. The fund was set up in conjunction with national charity Cardiac Risk in the Young (CRY). CRY aims to raise awareness of heart problems in young people and screens and funds vital cardiac-related research. The fund gave the proceeds of the event to the 1st Sandhurst Scouts to help provide a new roof for their hut in addition to a £500 donation to CRY. There were tournaments for different age groups with cups for the winners, and each player, winner or loser, came away with medals which were presented by Lewis's father, Barry Marsh. Youngsters also had the opportunity to have their heart checked using an ECG scan as part of CRY's community testing programme. Sandhurst Football Club Chairman, Phil Sigley said: "The good weather helped ensure a very successful tournament this year which was very well supported, and everyone seemed to have a very good time."
Issue 36
Cardiac Risk in the Young
|
29
Bulletin Board
CRY
CRY
Christmas Cards If you would like us to consider a design for next years Christmas Cards please contact us to discuss.
We are particularly interested in people who may want to run a competition in a local school or art college RING FENCED FUNDRAISING
Please remember that unless you notify us and get the necessary documentation and confirmation from the office for “ring fenced” fundraising before you start a fundraising venture, all funds raised will be used for CRY Core Funding. Retrospective “ring fencing” is unfortunately just not possible. CRY cannot be responsible for any “ring fenced” fundraising unless it has been authorised. “Ring fenced” fundraising is for specific projects only. After the successful conclusion of the authorised project, fundraising will be directed again to CRY Core Funding. Because of the appeal of certain projects, some will have a waiting list.
B
L
A
Z
E
Blaze is an organisation best known for their Firewalking Experience. If you are interested in something completely different- like learning how to walk barefoot across broken glass, experience being a fall guy or bodyguard or ‘simply’? surviving the call of the wild for 5 days and nights - you may finally have found the place to be. For more information on these events either contact the office or go to their website www.blazefirewalking.com. There are a number of different events on offer to those who are wishing to fundraise for CRY. Zip Wires, High Ropes Courses and Raft Building - you can be London Marathon 2004 taking part in all these exhilarating activities and more as part of a unique two-day residential adventure Challenge being promoted by CRY. CRY is currently looking for teams of eight people to take part in this nation wide Team Challenge which is taking place at purpose-built Outward Bound centres set in idyllic locations across the UK. Teams take on a variety of mental and physical challenges over a two-day period which is designed to promote teamwork within an enjoyable outdoors environment in the Lake district, North Wales or the Scottish Highlands. No previous experience is needed as all training is provided and if your team raises the minimum sponsorship level of £2,800 for CRY then all your team members get to take part for free!
Why not put on a CRY Heart and run the London Marathon for CRY. We have a limited number of subsidised places for those who have been long time team supporters of CRY, and want to run in one of the CRY Heart costumes. This year you will be in good company with a team from the Olympic Medical institute being led by CRY Chariman Greg Whyte.
If you would like more information please contact the office.
Please give me a call or email me if you have any Please bear in mind when If you would like CRY organising fundraisings that it suggestions on how you to consider any item would be brilliant if you could take would like the content of for Bulletin Board photos of your great day. It is your future fundraising please email or fax also essential that when you write pages to be laid out .
details (including your item) through to Steve on fax: 01737 363444 Issue 36
in to the office, that you clearly state how much was raised, by whom and if it’s for a specific memorial fund.
Best wishes Steve Cox Cardiac Risk in the Young
|
45
God’s Lent Child I’ll lend you for a little while a child of mine, God said, For you to love while he lives, and to mourn for when he’s dead It may be six or seven years or forty-two or three But will you, till I call him back, take care of him for me ? He’ll bring his charms to gladden you, and should his stay be brief, You’ll always have his memories as a solace in your grief. I cannot promise he will stay, since all from earth return, Bur there are lessons down below, I want this child to learn. I’ve looked this whole world over in my search for teachers true, And from the folk that crowd life’s lane, I have chosen you. Now will you give him all your love and not think the labour vain Nor hate me when I come to take this lent child back again ? I fancy that I heard them say” Dear God, Thy will be done, For all the joys this child will bring the risk of grief we’ll run. We will shelter him with tenderness, we’ll love him while we may, And for all the happiness we’ve ever known, we’ll ever grateful stay, But should the angels call him much sooner than we’d planned, We will brave the bitter grief that comes, and try to understand”. This beautiful poem was handed to Tony and Evelyn Sayer as they entered the church for the funeral of their son, Kevin, on 4 April 1995. Eighteen year old Kevin died on the night we left Norwich after our first player/public screening. We hope it’s words comfort you and bring you peace.