Newsletter No 6 - October 2008 Information Line 0121 357 8200

Charity News & Update

s I write this I cannot believe where the time has gone again! Every year the time appears to go quicker A and quicker and before we know it we are preparing our children for infant/junior school, secondary school and even college or University. My daughter Charlie has just moved up into juniors and although she is never happy at returning to school after a holiday she has settled back into school life very quickly. We would love to hear your stories of ‘school life with a cardiac child’ and even better would your child like to put their thoughts down on paper and tell us how they feel about school and if they feel any different with their heart condition compared to their friends. I do hope that all your children have settled into school life nicely and with not too many hiccups along the way. Your trustees all have experience of the education system from one degree to another, if any of you are having difficulties at school, please ring our helpline and Sue will direct you through to one of us. I know a lot of us strive for normality with our children but sometimes things have to be different, our vice chair Debra has written about her son Jason’s experience with exercise, but it would be wonderful for you to share your own experience with us. I do hope the turbulent financial strain that is troubling our country is not affecting you all too much, it is a worrying time for many people. I am sure many of you will agree that although finances can be a strain there is nothing more frightening than a child with a cardiac condition. We are planning our Christmas celebrations over the next coming months, hopefully we will meet you all at our Christmas party at our wonderful venue for the 3 rd year running ‘Aston Villa’. You will find enclosed your Christmas raffle tickets, if you could please try and sell your books as this pays for the Christmas party, the presents and also the gifts for the babies and children who find themselves on Ward 11 or 12 during the festive time . Warmest regards to you all Sandra Ramsey - Chair of Trustees

COMPETITION TIME

We are offering you the chance to win a Family ticket for 4 (value £35) for the pantomime 'Aladdin' on Friday 5 December 2008 at Artrix Arts Centre, School Drive, Bromsgrove Please answer the following question - In the pantomime, Aladdin. what are the magic words needed to open the cave?

OPEN ______All entries to be returned by 14 November 2008 First winning entry to be drawn on 15 November 2008

Answers to competition question with your name and contact details to be sent to: Young at Heart, 42 Thetford Road, Great Barr, Birmingham. B42 2HY OR Email your answer to: [email protected] INTRODUCING THE NEW CARDIAC LIAISON SISTER

Hello everyone,

y name is Teresa Figari, and I was appointed as the 4 th Cardiac Liaison Sister here M at BCH in April 2008 but I’m anything but new!!! I’ve spent the last 18 years as a Staff Nurse and then Sister on PBG / Ward 11 so I probably know most of you! I am a born and bred Brummie and have lived here almost all my life. I started my nurse training in 1974 at what is now City Hospital. While doing my children’s ward there I worked with a senior (rather scary) staff nurse called Pauline Dewick, small world isn’t it! I got married at the end of my training in 1977 to Ed who also worked at the hospital but as an accountant. I worked as a Practice Nurse while my two sons were little as the hours suited family life and I then moved to BCH in 1990 and made Paediatric Cardiology my career. Being on the baby ward made it easy for me to combine my work with my other passion which is breastfeeding. Ward 11 have the first dedicated breastfeeding room in the hospital. It was a difficult decision to apply for the Liaison post but I feel my experience will help me support families as they go through some of the most stressful times they will ever experience. I am loving the diversity of the job; one minute being with a newly delivered mom, the next minute talking to a 15 year old who’s having surgery for the first time. The added bonus is regular hours and no weekends. I am looking forward to supporting and promoting Young At Heart in my capacity as your new liaison sister.

A GUIDE TO EXERCISE

t is very difficult to find the right balance as far as exercise is concerned especially if your child is naturally I into sport, and it is extremely difficult to make the right decision as a parent. My son Jason was born with a complex heart condition and also has to take Warfarin so we have to be very careful what type of exercise, activities that he takes parts in. I can only speak from my own experiences and I have always sought the advice of Jason’s cardiologist but we have found that a small amount of exercise has been beneficial to Jason he enjoys having Karate lessons, he learns the discipline and respect side of the sport and also the moves, although he doesn’t take part in combat. Jason enjoys swimming he just has to be sensible and learn to know his limits, listening to his body knowing that when he feels that he needs a rest he takes one. Following the medical advice means that Jason still feels part of things and not excluded from conversation about sport with his friends. It was always explained that he shouldn’t take part in close contact sports/activities such as rugby etc and at first Jason was quite annoyed and he thought he would really be missing out but once all the details of why he should avoid such sports were explained to him he soon came around to the idea that it was the right thing to do and we have worked together to find alternatives. If Jason couldn’t take part in physical activities, i.e. within school, I asked if they could find an alternative activity for him to do and if you’re unsure of what type of exercise your child can be involved in just ask your child’s Cardiologist. By - Debra Bailey - Vice Chair

Some children with heart conditions may get tired quickly when exercising. They may also be restricted in the type of physical activity they can do. It is important to get advice from the child’s parents, cardiac liaison nurse or cardiologist on what exercise the child can do. More information The Department for Children, Schools and Families has more information on children with special needs and medical needs. • Managing Medicines in Schools and Early Years Settings’ - • www.teachernet.gov.uk/wholeschool/sen (March 2005). Available from • www.dfes.gov.uk/sickchildren http://publications.teachernet.gov.uk/

CHF Website 17.09.08 INTRODUCING OUR NEW PATRON

BOB BROLLY, MBE - YOUNG AT HEART PATRON and BBC RADIO PRESENTER

“We are delighted to welcome our new Patron, Bob Brolly, MBE to Young at Heart. When you have the pleasure of meeting Bob, you will see that he is a very caring and genuine person and that despite his busy schedule, he always finds time for people and supports many charities, particularly those which involve children. He has raised over a quarter of a million pounds for worthy causes over the years and charities continue to benefit from his good work. Bob’s support of Young at Heart is yet another example of his generosity. Bob himself had a stent procedure two years ago and his own brother, Pat, was the very first person to have open heart surgery in Ireland over 30 years ago. So Bob has an intimate understanding of how one’s life can be affected when you have someone close to you with a heart condition,” Martina Ponsonby, YaH Trustee.

LET ME INTRODUCE YOU TO OUR NEW PATRON ...... ob Brolly was born in Derry, Northern Ireland where he spent the first 15 years of his life. The family then B uprooted and moved to Coventry, England where he lives to this day. As a very young boy, growing up in Ireland, Bob spent many years singing in the choir at the Waterside Chapel, so singing was something that Bob had done from a very early age. Bob’s voice was trained by the Priests and he then became a soloist for many years. He studied engineering and served his apprenticeship in the car industry. After 6 years of studying engineering, a series of different jobs then followed from shoe shop manager to beer taster for Bass Breweries – not bad for someone who has never drunk alcohol! By this time, Bob’s family had moved into the pub trade and this is where Bob’s musical career was more or less launched. Bob formed a band in which he was drummer and singer. After many different band ‘line-ups’, Bob found his forte fronting the band and singing, which he is doing to this very day. His band, Calvary, toured the world as far away as Australia and America and all over Europe. In the last few years, Bob has had a complete change of musical direction in that because of his love of country music and his native Ireland, he now combines his favourite Irish tunes with songs from country artists, old and new – his favourite singers being Rodney Crowell and Vince Gill. Bob is very much in demand, having performed in some of the top venues like Wembley Arena, London, National Indoor Arena, Birmingham and the world famous Symphony Hall, Birmingham. Bob is also a very popular broadcaster presenting his own award winning Irish show every Sunday (4-7pm) and his afternoon music and chat show Monday-Friday (1-4pm) on BBC Radio Coventry & Warwickshire. He has won many major awards including the Irish World Radio Presenter of the Year, the Irish Post Media Person of the Year and Bob has received an Apostolic Blessing from Pope John in the Vatican.

For services to Broadcasting with the BBC and also in recognition of the wonderful work he does for charities, having raised over £1.5M for many, many needy charities, Bob was awarded an MBE. Although Bob loves being a Radio Broadcaster with the BBC, he has often said that the thrill of walking on stage, singing a few old songs and making people happy still gives him the greatest satisfaction.

(All communication for Bob Brolly must be made to: Young at Heart, 42 Thetford Road, Great Barr, Birmingham.)

WE NEED YOU !

YOUNG AT HEART YOUR CHARITY NEEDS YOU !

As you are all probably aware Young at Heart solely relies on donations to be able to continue to make a difference to the lives of children and their families living with congenital heart conditions. We are continually trying to find new ways of raising funds so that we can expand and evolve. Our aim is to add new activities for all our members for instance we are looking into various projects for our teenage members but to enable us to achieve this goal we need to raise extra funds. As you know we are all parents of heart children and we are all volunteers but we desperately need your help to reach and achieve this goal. Your contribution, however large or small, will help us improve the services that we can offer you our members and children and their families living with heart conditions. Ways you can help us, help YOU There are many ways in which you can help : Fundraising Ideas Make a donation now. Regular giving through direct debit. Giving regularly by direct- debit is a simple way to help Young at Heart’s on-going work. Monthly gifts provide the reliable income that we need to plan our projects effectively . Payroll Giving Fundraising Ideas Celebratory Gifts Non-financial Help Corporate Support Consider leaving a legacy in your Will or donate in memory of someone Leaving a Legacy Donate in Memory Getting Started Essential Planning Look at your fundraising target and the amount of time you can allow to fundraise. You could start by making a list of the people that could help……

Family and Friends Neighbours

Customers EVENT Your Company

Schools Local Businesses

Fundraising Ideas Organise an event or raise money by doing some individual fundraising. You may already know what you'd like to do, but in case you don't, we've got lots of ideas to help get your fundraising started – EVENTS 1. Choose a date and Venue Where will this take place? Home, office or garden etc. A key Issue is to find out which is the best time of year for your event to take place, also find out what else maybe going on in your local area. 2. Plan Your Theme For example if you are arranging a charity evening what type of theme you want it to be, if its held around Valentines Day it could tie in with The Worlds Congenital Heart Day and the emphasis could be on this. 3. Add to your Event Set your entry fee to your event; add extras to boost your donation, tombolas, raffles, or an auction. 4. Send out Your Invitations The more people you involve the more money you will raise for Young at Heart. Email, phone, and post out the details about your event to friends, family and colleagues. 5. Promote your Event Put up posters, contact local papers for coverage and please don’t forget we are always willing to help, just ask!!!! 6. Get Help Ask local shops, pubs, restaurants to donate prizes or display posters also ask your family, friends and colleagues to get involved it will give you an opportunity to share ideas. 7. Donations If your guests are tax payers ask them to agree to GIFT AID on your event forms or sponsor forms, this will enable Young at Heart to claim and extra 28% on every Pound raised at no extra cost to you or the person making the donation. 8. Thank Everyone. Thank everyone who has helped you organise your event and thank everyone that attends and has supported you, they will all be helping make a difference to Heart Children, so let them know how much they have helped raise. Again we can help you do this A to Z of Fundraising Ideas

Auction of promises, Abseil N ewsletter, netball

Bad hair day, barn dance Obstacle race, open garden

Car boot sale, coffee morning, Charity Night Pub quiz night, party!

Dress down day, dog walking Quizzes, Quilting

Employers support, Easter egg hunt Rotary club support

Fantasy football S ponsored horse ride/swim/walk

Guess the amount of money, garden party T reasure hunt, ten pin bowling

Head shave, hockey Use every opportunity

Indian head massage, ice-cream sales Valentine ball

Jewellery-making, jazz night Wine tasting, write to everyone

Karaoke, kiss-a-thon, knit-a-thon Xmas party, Xmas raffle

Line dancing Young and old – organize a family event

Murder mystery evening Zany clothes day

Website: www.youngatheart.org.uk Our Tel: 0121 357 8200 Our Address: 42 Thetford Road, Great Barr Birmingham. B42 2HY Registered Charity Number: 512815 DEEP CLEANING OF HEART UNIT

Deep Clean Some very important information that is relevant to all of our members. Our Cardiac department in line with the Government Initiative has had a mammoth deep clean, Ward 11 and Ward 12, Heart Investigations and Heart Outpatients. I think this is wonderful news as it gives our families confidence that the trust is committed to reducing infection. Every part of those areas have been removed and cleaned. Keep up the good work!

DENTAL HEALTH CARE

ICE – National Institute for Health and Clinical Excellence set guidelines and recommendations about care N and treatment. Over the past 50 years, at-risk patients have been given antibiotic prophylaxis before dental and certain non-dental interventional procedures. This has thought to have prevented the patient from developing infective endocarditis The Department of Health asked the National Institute for Health and Clinical Excellence (NICE) to produce a short clinical guideline which would give clear guidance on best clinical practice for prophylaxis against IE in patients undergoing dental and certain non-dental interventional procedures. The outcome of this report has shown that in summary, this guideline recommends that antibiotic prophylaxis solely to prevent IE should not be given to people at risk e.g. who have a heart condition before they undergo dental and non-dental procedures. It is still extremely important to maintain good dental health care and to encourage your child to brush their teeth twice a day and to keep regular dental appointments. It is also important to always inform your dentist that your child has a heart condition, as in some cases there is still a need for antibiotics to be given to children with certain heart conditions. If you have any concerns regarding antibiotic treatment before dental treatment you should always consult you cardiologist or Cardiac Liaison Nurse at your child’s Cardiac Unit.

MASCOT TEXAS IN TRIP TO PARIS

A young disabled boy from Winyates proved to be a very lucky mascot when he was invited to play his part in an international youth football competition. Texas Bishop, 11, who has cerebral palsy, has just returned from accompanying Team England out to Paris with their coach Jamie Redknapp in the Danone Nations Cup where he was the team’s mascot. The Danone Nations Cup, whose global ambassador is the legendary French footballer Zinedine Zidane, is the world’s largest football tournament for kids aged 10-12, bringing together 2.5 million competitors from 42 different countries. Through the Whizz Kids foundation, Texas’ mum Heather was contacted and asked if he would like to head out to Paris with the team, take part in all their activities and support them in all their matches. The team finished 15th out of 40, the highest they have ranked in 5 years. Heather said: “Texas had an absolutely wonderful time. He has gone through so much in his young life, including major heart surgery, so this was a real treat after all he’s had to put up with. Texas knew nothing about it until just before we set off for Paris - he was thrilled.” Sent in by Heather Bishop - Texas’ Mom AS WE REMEMBER SOPHIA...

SOPHIA JADE WILLIAMS - 28/01/06 - 02/03/08

ophia Jade Williams was born 28 January 2006 the first child of John and SSS Louisa Williams. She was a normal, healthy, beautiful little girl and developed well throughout the first 9 months of her life, bringing lots of love and laughter to her parents, grandparents, aunts and uncles. In the early hours of the morning on 10 November 2006 and without warning she suffered a cardiac arrest. Her aunty at the scene was able to perform CPR until the paramedics arrived. The triage team at Hereford County Hospital managed to stabilize Sophia and she was transferred to Birmingham Children’s Hospital Intensive Care Unit. She was kept on life support for several days and then made steady progress enough to be transferred to the cardiac ward. During the next 2 weeks several tests were carried out to determine the cause of the problem, however nothing could be detected. Sophia was allowed home on 28 November. Her family’s joy was turned to concern just 2 days later when she suffered another cardiac arrest; they wondered how much strain could her little heart take. Once again she was transferred from the Hereford County hospital to Birmingham Children’s hospital intensive care and was on life support for a couple of days. On the cardiac ward more in-depth tests were taken, Sophia spent her first Christmas there, and she finally returned home just before the New Year celebrations. It was never really determined what caused these cardiac arrests, but was felt that it was to do with the electronics of the heart. She was put on medication to slow down the heart rate and Sophia’s parents were given a defibrillator to carry around wherever Sophia went just incase of another attack. For the next 14 months Sophia made excellent progress, she loved life and was a tonic to be with. Her lovely smile was enough to melt anyone’s heart. To look at her you wouldn’t know that there was a problem. On 2 March 2008 Sophia passed away. She suffered another cardiac arrest but was unable to fight any longer. Sophia’s family remains ever grateful to the efforts of doctors and nursing staff at Hereford and Birmingham Children’s hospital. There are many babies and children suffering from various heart diseases and disorders. Donations to the Young at Heart charity would be greatly appreciated to enable them to carry on the good work that they do. John & Louisa Williams - Sophia’s parents

SPECIAL THANKS TO JOHN & LOUSIA WILLIAMS….

n behalf of all the Trustees and our members, I would like to say a special thank you to Sophia’s parents O John & Louisa Williams. They have written a lovely moving account about their beautiful daughter Sophia. While coping with their tragic loss, they have still found the time to think about our charity Young at Heart. Their family has shown wonderful courage by supporting us with their fundraising efforts these include: - donations to YAH at Sophia’s funeral, collection boxes at several venues and a planned sponsored cycle ride from John O’Groats to Land’s End. If any of you would like to support/sponsor or want further information about these events, please contact Sue on our information line.

On behalf of all our children with Congenital Heart Defects, thank you dearly. Sophia and her family are in our thoughts. Sandra Ramsey - Chair of Trustees

MAX MEETS OUR NEW PATRON

ax was invited to join Bob Brolly, MBE for a personal tour of the BBC Coventry & Warwickshire Radio M Studios. He had a wonderful day and thoroughly enjoyed his time learning about the equipment used and how it all worked. He even had the opportunity to record his own voice, which was a real treat. Bob was very welcoming and didn't mind Max exploring all the technology, he even let him wear his personal head phones. Thank you Bob, for making it such a happy experience.

“Meeting Bob isn’t the thing you do every day so when I did it, it was quite interesting. But when you think about it, I was exploding with joy. It was wicked and Bob is a really cool guy!” By Max Ponsonby (Age 9)

Max really getting into the swing of things! Testing, testing 123. Max with his brother Ben

Max was born with Pulmonary Atresia with a VSD and has been a member of Young at Heart since he was just few weeks old.

DONATION & FUNDRAISING --- THANK YOU’S

Mrs Tuffen & friends (in memory of ‘Angel’) - £70.00 Mike Ponsonby - £25.00 Mr & Mrs Kortbeek - £21.00 Sally McCully - £50.00 J R Titley - £20.00 L M Funerals Ltd (Late Mrs. Fallon) - £20.00 Sarah Morris - £30.00 F T & M Phelan - £30.00 Mr & Mrs Hatfield - £314.70 Craig Elliott - £70.00 CK News & Wine - £60.00 Londis, Thronbridge Ave - £22.16 Cartridge World - £25.00 Thank you to everyone involved in raising Kirsty Timmins - £1.00 funds on behalf of Young at Heart Bailey Brothers Funeral Directors (Late Sophia Williams) - £110.00 Mrs Owen & Friends (late Ken Owen’s funeral) - £160.00

HELP WITH BENEFITS

Young at Heart are often asked if we have any information regarding Benefits, the Citizens Advice Bureau website have a guideline to benefits and the most frequently asked questions. You may not even think you qualify but it really is worth checking out. You can also check with the Department for Works and Pensions look for the Families and Children and Disabled people and carers sections