<strong>ECHO</strong> NEWS <strong>ECHO</strong> NEWS RAYS OF SUNSHINE GRACE MALPASS Royal Albert Hall Rays of Sunshine contacted <strong>ECHO</strong> in May to offer some of our <strong>ECHO</strong> family members’ a limited number of tickets for their Royal Albert Hall concert this year. What a lovely opportunity! I don’t know which one of us was most excited about the Rays of Sunshine tickets when they arrived just before half term. My 8 year old daughter Francesca and I were thrilled to receive our tickets and the excitement only grew stronger in the run up to the big day. On arrival, Francesca was delighted to be given her light-up wand and flag and then to choose her raffle bears. Even before all the performances began, Francesca and I loved the wow of the Royal Albert Hall experience. Elliott Collict It is a little tricky to say ‘what was our favourite moment?’ at the June 7th Rays of Sunshine concert. Was it the moment that Leona Lewis was showered with glittery pink confetti-like paper or was it when Spelbound made one of their amazing dance performances? Or could it have been when the hosts Miss FM’s Melvin Odom and Rochelle Wiseman from The Saturdays invited some children on to the stage? Liz Quinnell told us “Thank you so much to <strong>ECHO</strong> for the tickets to the rays of sunshine concert. Thomas had an amazing time. He loved all the acts & JLS are his favourite group & they were even better than he had imagined. Leigh went with him & also really enjoyed it although I think he felt rather old!!!! Thanks again.” “It was a great evening and one we’re extremely proud of! “ said Katie Clark, Wish Manager at Rays of Sunshine, a charity and friend of <strong>ECHO</strong> which grants wishes for seriously ill children and teenagers in the UK aged 3 – 18. Sophie Bartlett was also lucky to receive tickets and took her Dad along “Thanks so much for the concert tickets. I loved it (and I think Dad liked it too!). My faves were Conor Maynard, JLS and Pixie Lott. Thanks again, x” The journey up to town for Claire Collict and her son Elliott started from Polegate midafternoon. After their train and several notably exciting trips in the train station lifts, they had arrived at the Royal Albert Hall, got their wand, raffle ticket bear and were making friends with Jason and his Mum. Claire explained to <strong>ECHO</strong> “Jason has been suffering from cancer and has a brain tumour plus other complications. Jason was absolutely adorable and Elliott and him really hit it off and had the same type of daft humour!” For Claire, the artists were brilliant, “Elliott loved Pixie Lott, he now loves Stooshe and is always singing their song, Black heart, and of course JLS” Although by the end of their performance both Jason and Elliott were very tired and had to sit on their Mum’s laps. Elliott and his Mum want to say a huge thank you to all the organisers, the artists and especially Rays of Sunshine for giving the children such a lovely time, it was truly appreciated. Francesca and I sat and danced alongside Karen Stuart and her son James. We agree with Karen that it was “a fantastic evening, albeit a really late one!” The music, the performances were all stunning and I think Francesca’s favourite has to be Spelbound. I thought Pixie Lott was terrific and Leona Lewis gave the most wonderful performance too. Thank you Rays of Sunshine for a most lovely memorable musical experience. Becky Kelway Thomas Quinnell James Stuart <strong>ECHO</strong> member Grace Malpass was born with Tricuspid Atresia. Grace featured in a previous <strong>ECHO</strong> newsletter when, in 2009 she got married and her and her husband asked guests to donate to <strong>ECHO</strong> in lieu of wedding gifts and donated £800. In March she wrote me this lovely letter: I wanted to write as I feel strongly that some parents of children with heart conditions and adult congenital patients may need some hope and inspiration. Grace, Jon and Charlie at Charlie's baptism I was always told that I would never be able to have children due to my heart condition. I was told that I would find it almost impossible to fall pregnant and should I ever fall pregnant that the baby would not survive due to the very low oxygen levels Each year, between 5,000 and 6,000 babies are born with a heart condition in this country. Whilst some of those (up to 35%) would have been diagnosed during pregnancy, the majority won’t be until after birth. For some of these babies, the fact that there is something seriously wrong with them will be obvious quite quickly and, hopefully, staff in the maternity unit will recognise the symptoms and the baby will be speedily referred to an expert Cardiology unit for assessment and treatment. For others, they will remain reasonably well just after birth and present with no obvious symptoms or signs before being discharged from the maternity unit with their unsuspecting parents. The baby might not show any really obvious signs at first, but may be slightly sleepy and slow to feed with very slow weight gain (or even some weight loss). Their hands and feet might feel slightly cold to the touch and they may look a grey, dusky colour. These signs may be particularly difficult to pick up for first-time parents, who don’t have other “healthy” children to compare their baby with, and sadly, all too often, GP’s, community midwives, health visitors and even doctors in Emergency departments also fail to pick up on the fact that a baby has a heart condition which, if left undiagnosed and treated, could ultimately (and quite quickly) become fatal. We frequently hear from parents whose new baby hasn’t been quite right, but they’ve been fobbed off with a diagnosis of a that my body runs on. Because of this, I would not be able to support fetal growth. So my husband and I were shocked when in January 2010, I discovered I was pregnant. Sadly, this pregnancy did not last and we carried on with our lives thinking it was just a freak thing to happen. We started the adoption process and were looking forward to having a family in some way. Imagine our surprise when I discovered I was pregnant again! Once again, we found out too late to offer maximum support to the baby (ie changing my medications, and taking things easy) and we lost this pregancy early on too. However, I am now delighted to tell you that last year I fell pregnant again and we now have a beautiful, happy healthy 4 month old son called Charlie. I am writing to you as even though it was a rocky road to have our boy, I wanted to inspire others not to give up. There is still little understood about the long-term lives of people with congenital heart conditions. Indeed I believe I am amongst one of the 1st generations to survive my particular condition into adulthood. When I fell pregnant with Charlie, I gave up work, adjusted my medications to "safe" ones “THINK HEART” CAMPAIGN cold, chest infection or even just being tired, and it’s not at all unusual for parents to be accused of being overly anxious about something which is “nothing” only to find their baby being retrieved and blue-lighted into the <strong>Evelina</strong> days or even hours later, critically ill and fighting for life. During Children’s <strong>Heart</strong> Week in May this year, Children’s <strong>Heart</strong> Federation (CHF) launched their “Think HEART” campaign to raise awareness of the signs and symptoms of congenital heart disease, particularly in newborn babies . The campaign aims to make GP’s, clinicians, health visitors, midwives and nurses in the local community more aware of what to look out for in a newborn infant and also to empower parents with the knowledge to enable them to be able to press for the investigations and treatment that their child may need urgently. Think HEART: • <strong>Heart</strong> rate - too fast or slow? (normally 100 to 160 beats per minute) • Energy & Eating - sleepy, quiet, too tired to eat, falling asleep during feeds? and went on oxygen 24 hours a day. All of these things had no hard evidence that it would help my baby to survive, in fact, my cardiac obstetrician said that having oxygen wont make any difference at all. I don't know if it helped or not (it only increased my O2 levels by a few %), but I was willing to try anything and now I have my baby. Grace as a toddler The medics that look after us heart patients are absolutely wonderful and extremely skilled and knowlegable, but some things are about more than medicine. We all know as heart patients that hope and faith, and the love and support of our family are key to surviving congenital heart problems. They are also key to living a happy and fulfilled life. Never give up hope, and don't always take no for an answer! I just have to look into my baby's eyes to know that miracles can happen, even in the most unlikely places. Kind Regards, Grace Bevan (was Malpass) Congratulations Grace and thank you for sharing this wonderful news with us! • Arterial Saturation - a blue, dusky or grey colour (normal oxygen saturations 95-100%)? • Respiration - breathing too fast or slow? (normally 40-60 breaths per minute) • Temperature - cold to touch - particularly hands and feet <strong>ECHO</strong> fully supports this campaign and is doing all we can to promote the message, so if you would like to do your bit and get involved, leaflets and posters are available directly from CHF, which you can distribute to your local GP surgery, Children’s Centre, Schools, local hospital and anywhere else you can think of where the health professionals there might come into contact with a baby with a potential cardiac condition. Please contact Danny Beales at CHF on dannyb@chfed.org.uk for more information and to order an awareness pack. For more information about the campaign in general and the work CHF do, please visit their website: www.chfed.org.uk. Jo Wilson 04 <strong>Evelina</strong> Children’s <strong>Heart</strong> Organisation <strong>Summer</strong> <strong>2012</strong> <strong>Evelina</strong> Children’s <strong>Heart</strong> Organisation 05 <strong>Summer</strong> <strong>2012</strong>