here - Little Hearts Matter

Little HeartsMatterNewsletterSpring 2011Future PregnanciesAsk The ExpertsGrandparent's PagePages 6 & 7Pages 13Page 14 & 15Sunday 22nd May 2011Sign up...sign up... On Your Marks for Little HeartsRun. Worthing Sea Front, Sunday 22nd May.It's time to dust off your runners and start training forthe On Your Marks events, 2011. We are extremelypleased to be running a new event along the beautifulWorthing coast in May. The weather forecast looks goodand we expect to have a great turn out! Many of ourmembers have asked for a run in the south of Englandand we are hoping that everyone will encourage theirfamily and friends to sign up and come along and enjoythe day. Those who know the area will appreciate justhow stunning it is and what a delight it will be for visitors,situated between the beautiful South Downs NationalPark and five miles of award winning coastline, the townwelcomes visitors with its attractions, friendly restaurantsand fabulous shopping by the sea. It is easily accessibleby road and public transport. We look forward to seeingyou on the 22nd May.Our annual On Your Marks for Little Hearts Shugboroughwill take place this year on the 25th September, wherewe hope to have over 300 runners and autumn fayre,with children's races, face painting, toy, book and cakestalls along with tombolas and massages! Come andjoin us by running, walking, volunteering or cheering.This edition hasbeen kindlyfunded by"Whilst we take our fundraising and our charities very seriously weinsist on having lots of fun while raising as much money as we canfor this very worthwhile organisation."Katie Shanahan, Finance, Admin and Recruitment Manager.www. synectic-solutions.comA company limited by guarantee, registered in England and Wales, number 06442071, registered office 11 Greenfield Crescent, Edgbaston, Birmingham, West Midlands, B15 3AU, registered charity number 23290.

Finally I have some wonderful news.We have a new Vice-President.As you know our Patron, Presidentand Trustee Valerie Howarth, or to giveher her full title, Baroness Howarth ofBreckland has many friends in the Houseof Lords. Through her talking about thecharity she has gained the interest andsupport of another member of the House,Baroness Rendell of Babergh. Most ofyou will know her better as Ruth Rendellthe famous writer of detective fiction. Weare so excited to have her on board."I have a soft spot for charities thathelp children. When I think about LittleHearts Matter and what they do I tryputting myself into the shoes of thesechildren's parents. I have, as you mightguess, a pretty active imagination andthough I don't come near to enteringinto their fear or feeling with their love, Ido manage a degree of empathy. Thatempathy doesn't make me feel humbleor ashamed. It makes me feel lucky. Itbrings me to an enormous admirationfor these brave children and their evenbraver parents."I hope to see many of you at the Safeand Sustainable regional consultationevents. Please remember that the LHMteam are here if we can help in any way.THANK YOULHM In The MediawithEmma Pellingemma@pellingpr.co.uk0207 624 7533It was lovely to meet up again withso many of you at the Open Day inMarch. I’m always surprised at howmuch the children have grown sinceI last saw them! It was also great tomeet new families and talk to themabout how they can support thecharity through media work.As you all know, the Safe andSustainable review of children’sheart services has been high on theagenda over the past few monthsand I have been working consistentlywith the media. Firstly, I’d like to saya big thank you to all of you thathave offered to support this processby showing your interest in talking tothe media about your experiences.It is so important that your views areheard and I am working hard atgetting your voices aired as widelyas possible.During February we were featuredprominently in the Independentnewspaper. Louise Hall was interviewedfor this piece and talked clearly aboutthe need for change (many of youwould have also heard Louisetalking about this at the Open Day).As we go out to consultation therewill be on-going media interest and Iwill be focussing on regional mediaover the coming weeks.Looking back to the last part of2010, highlights included HannahPalmer speaking at an event at theHouse of Commons with the mostamazing clarity and focus aboutthree main aspects of her life andabout the need for politicians andNHS teams to always keep childrenand young people born with heartconditions high on the priority list forcare. The event was to give MPsthe opportunity to meet withmembers of the Cardio and VascularCoalition, a collection of some 47cardiac or vascular charities whorepresent users of cardiac services.Over the Christmas period PaigeLaight kindly put her name to aBirmingham based Christmasappeal on behalf of Little HeartsMatters. Thank you Paige!The awareness team is continuingto work on the shaping of theJourney to Independence which willbe our key communication focus forthis year.As always, please send me yournews and I look forward to being intouch with many of you soon.Many of you may have noticed thatwe have updated our logo. We wouldlike to express our sincerest thanksto Sarah Durkin, who is a member ofLHM and whose daughter Cerys hasa single ventricle heart condition, andher sister 'Aunty Sharon' who haveso very kindly donated their designskills and redesigned the LHM logovoluntarily.They are also designing a brand new'Journey to Independence' brochureand helping us look at all of ourrebranding.Thank you so much Sarah, Sharonand Cerys, we really appreciate allyour help and work, and love what youare doing.Hannah Palmer, Suzie Hutchinson, JonBrunskill at the House of Commons3

News continued...Safe and Sustainable ConsultationProgramme ends on the 1st July 2011Over the past few weeks the LittleHearts Matter team have been sendingout copies of the NHS's Safe andSustainable Children's CongenitalCardiac Surgical Services Consultationdocument.We urge you to make sure that yourvoice is heard within this consultationprocess as the changes suggestedmay change the way surgery is offeredto your children in the future. If youhave concerns or you agree with thechanges proposed, make sure thatyour voice is heard.There are a number of ways that youcan get involved.Regional Consultation EventsThe NHS consultation response• Enclosed with this copy ofthe newsletter is the NHSQuestionnaire. Using yourconsultation guide completethe questionnaire and sendit back to Ipsos Mori in theenvelope provided or go onlineand complete the NHSQuestionnaire, www.ipsos-mori.com/safeandsustainable• Attend one of the regionalconsultation events.The Little Hearts Matter consultationresponse.The Little Hearts Matter ConsultationReview team are drawing togethera response about the shape andservice provision set out in the NHSconsultation document. Please let theLHM team know what service provisionyou are looking for by completing theLHM questionnaire that you have beensent or by going to the LHM websitewww.lhm.org.uk and completing theattached Word document.If you have any worries or concernsthat you would like to speak to LHMabout don't hesitate in contacting us.Either leave a message on the LHMwebsite, email us at info@lhm.org.ukor give us a ring on 0121 455 8982.Location Date & Time VenueBirmingham 4th April 2011, 6 - 8pm Maple HouseCardiff 5th April 2011, 6 - 8pm Cardiff City FC StadiumNewcastle 7th April 2011, 6.30 - 8.30pm Discovery MuseumBirmingham Youth Event 9th April 2011, 11am - 1pm Maple HouseOxford 4th May 2011, 6 - 8pm Kassam StadiumLondon 7th May 2011, 11am - 1pm Emirates StadiumWarrington 9th May 2011, 6 - 8pm Halliwell Jones StadiumLeeds 10th May 2011, 6 - 8pm Royal Armouries MuseumYork Youth Event 14th May 2011, 11am - 1pm The Royal York HotelGatwick 19th May 2011, 3 - 5pm Copthorne Effingham ParkCambridge 23rd May 2011, 6 - 8pm De Vere University Arms HotelSouthampton 24th May 2011, 6 - 8pm The Guildhall (part of the Civic Centre)Taunton 7th June 2011, 3 - 5pm Taunton RacecourseLeicester 16th June 2011, 6 - 8pm Walkers Stadium4Help your MP understand Safe and SustainableMany Members of Parliamentare currently being lobbied tosupport their local cardiac hospital.Their fear is that patients willlose all of their cardiac care fromtheir region. Many of them areunaware that the changes plannedwill only make a difference forsurgery and that the plan, ifCommissioners choose the rightoption, will give children not onlya better survival rate but a betterchance of a good quality of life.As you know Little Hearts Matteris working to ensure that thepattern of cardiac units offeringsurgery will provide the highlevel of skill needed to treat andsupport the children, and theirfamilies, with the most complexof all cardiac disorders whereverthey live in England and Wales.To help MPs understand that theneeds of children with complex

MedicalThe article below looks at the emotional rollercoaster of futurepregnancies after having gone through the diagnosis ofhaving a child with a single ventricle heart condition.If you have had a child affected by acomplex heart problem, the thought offuture pregnancies will inevitably be ascary prospect. Making the decisionwhether to try again is a complex one,coloured by the painful memories ofwhat happened in the previouspregnancy or at birth when thediagnosis of a cardiac defect wasmade.For those parents who chose to endthe pregnancy or whose baby diedafter birth or whilst undergoingtreatment, there can be a conflictbetween treasuring the memories ofthe baby who died and the hopes ofhaving a healthy child.Although we know from researchand experience that if you have had achild with a congenital heart defect,there is a small increased risk in futurepregnancies, by far the most likelyoutcome is that you will have a childwith a normal heart.Your own individual recurrence riskwill be given to you by your medicalteam, but the range could be anythingfrom 2-3% to 9-10%. The factorsinfluencing this include the exact natureof the condition your previous child hadOur StoryWritten byRuth Kirchmeier, Birmingham Women's HospitalSherrida Rollings, Guy's and St Thomasand your individual family background.However it may help to bear in mindthat even if the recurrence risk is 10%, itmeans that you have a 90% chance ofyour baby's heart being normal nexttime, and even if there is a problem itwould not necessarily be the same, oras severe, as your previous child.Whilst statistics such as these aregiven to reassure you and help youmake plans for the future, we knowthat when you have had a child with acongenital heart condition, it is hard tobelieve that it will not happen again.Preconception CareMost parents will want to know if thereis anything they can do to reduce therisk of recurrence. Whilst as yet, thecauses of single ventricle heart diseaseare not known there are a few simplethings that parents can do to keepthemselves healthy and therefore givetheir baby the best chance.Eat a good balanced diet includingfoods rich in Folic Acid, e.g. fruits,green leafy vegetables, lentils,chickpeas, some cereals and bread.Cut down on the intake of caffeine toreduce the risk of miscarriage.Reduce and if possible stop smokingprior to conception. Smoking can affectthe fertility of both men and womenand may mean it takes longer toconceive.Reduce and if possible stop drinkingalcohol prior to conception. Alcohol toocan affect both men's and women'sfertility.Take 400 micrograms of Folic Acidonce a day ideally for three monthsprior to conception and for the firsttwelve weeks of the pregnancy. This isthought to reduce the risks of neuraltube defects such as spina bifida.Exercise regularly to maintain areasonable level of fitness.Facing the emotional impact of afurther pregnancyNo one can take away the anxietywhich the thought of a future pregnancybrings.Sometimes it might be helpful forparents to see their obstetrican or GPprior to embarking on a pregnancy, totalk through some of the issuessurrounding how a subsequentpregnancy would be managed andwhat support could be given. For someparents, making a decision to try againcan be helped by talking to otherparents who have had an affectedchild and who have had a furthersuccessful pregnancy. Little HeartsMatter can put parents in touch withone another and these contacts can bevaluable sources of support both priorand during a pregnancy.The booking scanThe booking scan, usually carried outby about 12 weeks of pregnancy, willhopefully be a positive affirmation thatso far all is well and the first hurdle ofearly miscarriage is past. Seeing thebaby on the screen can bring a mixtureof emotions as hopes and aspirationsfor this new baby combine withmemories of scans in the previouspregnancy.Further routine screening tests willbe offered to look for the risk of Down's6Lynne and Caryshad always wanted three children butI after our second daughter, Carys,was born with a single ventriclecondition, I started to think it wouldnever happen. To start with, there wasso much else to think and worry about.I wanted to get her three operationsover with before thinking about gettingpregnant again. I did not want to becoping with a pregnancy at the sametime as a big op. We were expectingthe Fontan at about three years old butin the end she was nearly five beforehaving it.Then there was the risk of ithappening again – it was hard to trustin my body’s ability to nurture andgrow a healthy baby (even though Ihad managed it once with Hannah). Ihad times when I was focused on thestatistical risk (which was fairly small)but other times (often in the wee smallhours) when I was terrified of the riskwe might be taking with this as yet notconceived new person.Over the years we had had supportfrom the medical team – we had visitedthe fetal medicine specialist to get anassessment of our risk factors whenCarys was two or three and this hadbeen a very useful session (althoughvery uncomfortable being back in theunit where Carys’ problems were firstdiagnosed).It finally took us over seven years tomake the decision to try for anotherbaby. Once the blue line appeared wethen entered an anxious nine monthswait. The local obstetricians were verysupportive – the doc who did ourgenetic testing in early pregnancy alsothrew in a quick nuchal translucency

syndrome and throughout pregnancy,the general size and growth of thebaby will be assessed.All parents of a child with a congenitalheart condition should be given theopportunity to have a specialist fetalcardiology scan if they want one. Thiscan be arranged as part of the bookingprocess.How early in pregnancy can heartabnormalities be detected?Unfortunately congenital heartconditions can only be detected bydetailed ultrasound scan andtraditionally scanning in pregnancy forthe detection of heart abnormalitieshas been around 20 weeks ofpregnancy when the heart is the sizeof a walnut.As scanning technology and expertiseof those carrying out the scans hasimproved, it is now possible in somefetal medicine centres to offer an initialheart scan at around 14 weeks.Clearly for parents who have had apreviously affected child, anyreassurance which can be given earlierin pregnancy is beneficial. Parentswould need to talk to their obstetricianto find out whether early cardiac scansare available in their area.What can be detected at thisearly scan?The heart at 14 weeks is about the sizeof a pea and therefore it is not possibleto visualise all the structures in theheart in sufficient detail to reassureparents that the heart is completelynormal but it is possible to detect majorabnormalities. The team will also lookfor other indications that the baby mayhave a problem for example, thenuchal translucency - fluid filled spaceat the back of the baby's neck (seebelow).If all of the tests are normal it is likelythat the heart will be normal although afurther scan will be arranged around20 weeks for added reassurance.Why is a measurement of thenuchal translucency carried out?It is known that there is an increasedrisk of the baby having a heartabnormality if the measurement of thenuchal translucency is larger than itshould be for the number of weeks ofpregnancy.An increased nuchal translucencymeasurement is also a marker ofincreased risk of chromosomeabnormalities such as Down'ssyndrome. If this was found to be thecase, the clinician would discuss withparents whether they would like furthertests to check whether the baby'sgenetic make-up is normal.What happens if an abnormalityis found?In the rare case that the fetal medicalteam detect or suspect that there is aproblem with the structure or functionof the heart they will organise forfurther scanning and other tests to beconducted.Throughout the process expectantparents will be involved in discussionsabout the baby and any treatment paththat is suggested for the baby andmother's care.What other tests are offered inpregnancy?If there are indications that there maybe an abnormality in the heart, otherorgans, growth or development of thebaby, further diagnostic tests will beoffered to obtain additional informationabout the baby's genetic make up.Chorionic Villus Sampling takes asample from the developing placentaand is carried out at around 11 weeks.The procedure carries a risk ofmiscarriage of about 1 in 75 and thefirst part of the result (the PCR test)looking at the three more commonchromosome differences whichincludes Down's syndrome initialresults are usually available in 3 - 4days. The full results are usuallyavailable within three weeks.Amniocentesis takes a sample ofamniotic fluid from around the babyand is carried out at around 15 - 16weeks. The risk of miscarriage is about1 in 100 - 150 and the first part of theresult (the PCR test) looking at thethree more common chromosomedifferences which includes Down'ssyndrome, is usually available in 3 - 4days. The full results take 2 - 3 weeks.It is very important that parents aregiven adequate opportunities to askquestions and voice their concernswith their doctors or midwives so thatthey ultimately feel comfortable withthe decisions they make.Whichever antenatal tests parentschoose, waiting for the results will bean anxious time. Many parents chooseto wait until they have had thereassurance of a normal result beforetelling other people about thepregnancy and this can be quite astrain, particularly if they have optedfor a later test.It is important to remember that mostfuture pregnancies will have nocomplications and most importantlythat the new baby will be born withoutany problems.The rest of the pregnancyMost parents who have had previousproblematic pregnancies, talk aboutthe heightened sense of anxiety whichremains throughout the pregnancy andhow they worry more about otherthings going wrong, such as the babynot growing, not moving or beingstillborn. This is a completely normalresponse to what has happened in thepast and it is often helpful to talk toothers who have had similarexperiences as they will understandthis mixture of fear and hope.Midwives and doctors need to beaware of the increased anxieties thatthese parents will feel and allow timefor them to voice their concerns.The birthMost parents with no previousproblems view the birth with somesense of trepidation. For parents whohave memories of their previous birthand what they had to face following it,the birth will be a further time ofextreme anxiety and dread thatsomething might go wrong even at thislate stage. It is not until the baby isfinally in their arms, having beenchecked over and pronounced healthy,that parents will gradually begin torelax and look towards the future. Toembark on a future pregnancy is acourageous undertaking, but for mostcouples it is well worth the emotionalrollercoaster ride it entails.scan (not offered at our unit at thetime) which showed a low risk for heartdefects. The same man did a verythorough abnormality scan at 21weeks but still referred us to the foetalmedicine unit in Birmingham (back inthat room again!) for a further heartscan a few weeks later, just for ourown peace of mind. Each time wewere assured that nothing abnormalhad been detected, but it was difficultto believe.At 35 weeks pregnant a routinecardiac catheter appointment came upfor Carys so off we went to BirminghamChildren's for a two night stay (onthose wonderful put you up beds!). Anuisance - but better to get it over with- I thought. However, a large blood clotfound in her pulmonary artery duringthe catheter saw Carys waking up inthe HDU with emergency open heartsurgery planned for the next morning.Carys had another huge operation,time in ITU, HDU, on the ward, pacingwires, chest drains, drug pumps...thewhole shebang. The cardiac nursingstaff were starting to panic about justhow big I could get before they wouldbe called upon to step in as midwives.Everything I had been at such pains toavoid about the idea of being pregnantduring an op all came to a pass in theend anyway.Jacob was born a couple of weeksafter Cary's eighth birthday and fourJacob, aged five monthsweeks post-op.He was perfect (the paediatricianmade sure to pay particular attentionto his heart at his postnatal check). Heis now six and loves coming to LHMevents where he was impressed tohave been lent a much loved bookabout the human body. He has beenknown to cover up half of the picture ofthe heart and ask "is that what Caryslooks like inside?.7

My storyBelow Jenn, who is 33 years old and was born withTricuspid Atresia very kindly agreed to let us publish someof her life story.Written byJenn Costantino8My name is Jenn. I am 33 yearsold and I was born withTricuspid Atresia.As a baby I did not have my tricuspidvalve and not a sufficient amount ofoxygen circulating. I was referred to asa 'blue baby'. My lips, toes, fingers,everything was blue.At two and a half months old I had aBT shunt in order to increase myoxygen.It was hard keeping up with otherkids and I could rarely play outdoorgames because I would always falldown and get tired easily. I spent mostof my time drawing instead.At eight years old I went into thehospital to have the Fontan procedure.It was the first of its kind and wouldhelp create a passageway for bloodand oxygen around the heart and tomy lungs. I don't remember muchabout it except for the fact that I wasreceiving a lot of presents from visitorswhom I loved. I was home schooledduring recovery and it seemed to gopretty smoothly.I stayed in pretty good condition for awhile after my surgery. During HighSchool though, I started feeling afluttering in my chest and would getdizzy and nauseous. One time Iblacked out. When this happened Ihad to be rushed to the hospital to bedefibrillated, basically my heart wasshocked back to its normal rhythm.This happened several times within afew years of each other, it was due tothe extra scar tissue in my heart aftermy surgery. I was still very much ableto live a normal life though.After High School I went to ParsonsSchool of Design in New York to studyfashion design.After Parsons, I began following therest of my dreams, which were singingand acting. I was in an actingprogramme and studying Voice.Breaking into the industry was mymain concern and nothing was goingto go stop me!!The summer of 2001, at 22 years oldI decided to go on vacation. Firstly Iwas going to San Francisco to visit afriend and then to Las Vegas for a fewdays with some other close friends.Well, it was probably my first trip asan adult by myself and I was so excitedto really get out there on my own. Iremember my mother gave me a notebefore I left, telling me how proud shewas that I had gone through so muchand am as strong as I was.So I went to San Francisco, with nota care in the world. My second daythere, I felt funny, and I thought maybeit's a palpitation. I was sure it was justthe crazy hills there, they areexhausting!The third day, my friend had to workso I was going to take the bus to themuseum. On the bus there I keptthinking something doesn't feel right,and I was getting dizzy and nauseous.I knew I was in flutter, so now I'm onthe other side of the country, what do Ido? As soon as I got off the bus, I gotback into a cab to my friends's placeand was terrified. I didn't have a cellphone yet, so I couldn't call him. I justprayed that I would make it back OK. Iwas alone and didn't know what couldhappen.At his place I called my doctor who Ihave known since I was born. He said,OK my friend is at this hospital and sheis going to take care of you.I didn't call my mother because Iknew she'd be on the next plane andall I have to do anyway is get shockedback to regular rhythm. It's like gettingyour nails done, quick and easy, right?

So my friend stayed with me at thehospital and the next morning theyshocked me back, this was also theday I was due to catch a plane forVegas. I begged the nurses to let mego and promised I would stay calmand not do anything crazy, I justwanted to continue my vacation I hadplanned... so they let me go.When I got to the airport I called mymother and told her, she was upsetthat I hadn't called her right away but Ialso never heard her sound so proudof me that I took care of it right awayand was able to get through it alone.As soon as I got on the plane theflutter started again, it just wasn't asbad. I managed to relax a lot in Vegasand made it back to New York safewithout having to be admitted into ahospital.Once I got back though I went to mydoctor, the flutters wouldn't stop andhe told me I needed to have apacemaker. I was devastated, if Ineeded a pacemaker at 22, what wasgoing to happen to me when I was 60?My grandmother has a pacemaker, notme!I went in for a further evaluation andit turned out I needed a revised Fontanprocedure. The doctors did tell me thatI could live with the irregular rhythm fora while if I wanted to wait. But whywait? My life, my dreams, everythingwas just disrupted at this point; I mightas well get it over with.My surgery was scheduled for 13thSeptember 2001, two days after 9/11,so it was moved to the following week.So, I went in and had my surgery. Itwas not like when I was eight, I liked itwhen I was eight, myparents would have tohear everything thatwas going to be done tome and then tell me thateverything was going tobe OK. Not this time, Ihad to listen word forword to everything thatwas going to be done tome and I had to give theOK. It was the scariesttime of my life, I thoughtI was done withsurgeries.While every otherNew Yorker was thinkingabout 9/11 and whatwould happen to NewYork, I thought aboutrecovering and gettingback to doing what Ilove in New York.Dealing with 9/11 andopen heart surgery wasnot easy at all.I got through it, andwas out of hospital ineight days, back toacting classes withinfour weeks and spentthe rest of the yearhealing, auditioning and focusing onmy voice.This past summer I had to have abattery replacement for my pacemaker,I told the doctors though I had to finishrecording my debut CD first. So twodays after recording my last song'Everywhere You Are' I went in forsurgery, with every surgery there isfear, however I know that I will pullthrough because I want to be sure Ican go back to living life and doingwhat I love, which is music!And that's exactly what I did, onlythree weeks after my surgery I sang'The National Anthem' at KeyspanPark in support of The American HeartAssociation. It was probably the mostdifficult song I ever had to sing, notbecause of the high notes (lol), butbecause of the strain that my body wasgoing through.I'm not telling my story for people tofeel bad for me or to gain sympathy.We are all born with issues and for areason. I want to get my story out thereto inspire people. I'm finally at a pointin my life, where I feel healthy enoughto do just that.Since my 2001 surgery I have beenworking in the fashion industry, donebackground work in television andmovies, performed at The VarietyChildren's Telethon, modeled onProject Runway to raise heartawareness. Most importantly though Ihave followed my dream of singingand recorded my debut CD 'The BestPart of Me' in which I wrote seven outof the ten songs.Life is such a gift and if you don'ttreat it as the precious jewel that wasgiven to you it will just go to waste.I am 33 years old, with a pacemaker,but I also have talent, drive and peoplewho love and support me. I must alsomention that I am now in perfecthealth!! I can go out dancing, travelwherever I would like and feel free totry things I would have always beenafraid of exposing myself to.I'm not sure what my future has instore for me, but for now I will focus onmy dreams and bringing inspiration toothers whether it's through music, artor simply sharing this story with others.I am living proof that miracles dohappen! Never stop believing inyourself or your dreams, because I willnever stop believing in mine.9

FundraisingDear Members and Supporters,I write to you a few days after attendingmy first Open Day and getting to meetmany more of the families that LHMsupports. It was wonderful to see thechildren of all ages enjoying themselvesand the teenagers catching up with oldfriends.Parents also caught up with friendsthey have made over the years andfamilies who came for the first timewished they had come earlier and wentaway having made friendships that arelikely to last for many years. They alsogained a much deeper understanding ofthe breadth of services we offer forparents and children from diagnosis allthe way through the family's journey.What I heard so many of our memberssay throughout the day was thank you,and it's something I would like to say toyou, the members, as it is the fundraisingthat you have been involved in and thedonations that you have sent thatcontinue to enable the charity to offerthe support and services it does forexisting members and the many newpeople that are being made aware thatwe are here to help all families where a£300,000£265,000£250,000£200,000£150,000single ventricle condition has beendiagnosed.Enjoy the summer and please keepus updated on all the fabulous£100,000fundraising you are doing. You can poston our Facebook page; we now have£85,163over 3,000 fans who view the posts on aregular basis.Warm regards,Shelagh. £50,000Please continue to help us raise the vital funds we need to continueour work, we receive no government funding and rely solely on thedonations from individuals, groups and companies. Everything youdo makes a difference. Please try and support us in any way you can.Legacies10We recently received a legacy from a long standingsupporter, who, after he had taken care of his loved ones,chose to leave a legacy to us, for which we are extremelygrateful. Following on from this I was talking to a membera few weeks ago and explaining the difference legaciesmake to charities generally and the fact that somecharities rely on legacy income to fund up to 50% of theirwork.It is a common myth that only the rich and famousleave money to charity when they die, this couldn't be anyfurther from the truth. The reality is it is everyday peoplewho when writing their will include a charity to benefit. Themember was very knowledgeable about the workings ofcharities and was in complete agreement. She mentionedthat she had indeed left a legacy and told me the charityshe had chosen, I was quite surprised to hear her choicebut also very understanding that we all have our personalconnections, when I asked her why she chose this charity,she said "because they asked me!... actually I didn't eventhink about LHM and come to think of it I've never heardthe charity talk about or ask people to consider leaving alegacy for the work you will need to do in the future!" Welooked at each other and smiled, both learning somethingfrom our conversation.It can feel uncomfortable talking to people about willsand legacies, but having taken care of your family andfriends, please do consider a lasting legacy to us ifyou can. You may also be interested to know that theGovernment is aiming to make legacy giving the normand has introduced a reduction in inheritance tax rate forthose leaving 10% or more to a charity.

10 ways you can help usto raise vital fundsMy fundraising Pledge toLittle Hearts MatterFill up the flatpack donation boxand return to usOur flatpack donation box takes 30 seconds to put togetherand 10 seconds to put in a prominent place in the house.Then all that is required is encouragement so all the familyhelp fill it, this could be by donating money given forcompleting household chores. Working family memberscan also donate the spare silver that jangles around atthe end of the day. A full collection box holds on averagearound £25.Ask your school, company,friends to do the sameBecause the collection box is such an easy thing to do,we would also like you to encourage your friends, family,school, pub, in fact anyone you can think of to do the sameas you.Just call us on 0121 455 8982 or email us and we will sendyou as many as you need.Recycle your ink cartridges andold phonesWe get £1 for every cartridge and up to £30 per phone.All you need to do is pop them in the bag and then in thepost. How about asking your colleagues to also donatetheir old phones and cartridges?Ask your company if they have acharity of the yearDoes your company have a charity of the year? If so wouldyou nominate us? Or let us know if we need to apply. Thisis an area we really want to build on and have worked withboth small and large organisations in the past.Use Easyfundraising whenordering on-lineWhy not raise funds for us whilst shopping on-line? Aftersetting up an account you can choose from a large list ofstores to shop on-line with and they will give a percentageof however much you spend, to us. It won't cost you a pennyextra, and as many high street stores offer you a discountfor shopping on-line it could even save you money.Visit www.easyfundraising.org.ukSign up to ourLotteryFor £1 a week you will be entered into the weekly lottery.There are over 160 prizes including a £1,000 cash prizeevery week.45 pence of every pound comes directly to us to help fundour work.Visit www.tlclottery.co.ukJump out of a plane or climb amountain for us!Imagine standing at the edge of an open door way in anaircraft flying at 10,000 feet - the noise of the engines andthe wind ringing in your ears with only the outline of distantfields below, falling forward into the clouds, and free-fallingat over 120mph! Or if conquering mountains is your game,why not climb Kilimanjaro, the tallest stand alone peakon the African continent...experience jungle and dramaticsunsets. A truly awe inspiring trek and life changing journey.All in aid of children born with half a heart.Sign up to a monthlydirect debitDid you know that you can set up a direct debit and givea monthly contribution to Little Hearts Matter, this way ofgiving is simple and allows us to be able to plan ahead aswe can forecast more accurately how much income wewill receive a month. If this is something you would like todo, please complete the form (on page 25) and send backto us.We are extremely grateful for donations from £1 to£1million per month!Organise a summer BBQ in aidof LHMThe sun is coming out and the BBQ is out of the shed. Whynot invite all your friends and family and have a charity BBQin aid of LHM.When writing your will considerleaving a legacy to usIf you are putting your affairs in order and would like toleave a legacy to a charity to enable them to continue theirservices in the future, please consider Little Hearts Matter.Thank you11

Spotlight On...In every issue we feature articles where we talk about differentaspects of education and cover ideas about possible sources offinancial support to help you.EducationParent Partnership ServicesThis article looks at the role of ParentPartnerships, who can be a great sourceof local support as you work to ensureyour child's educational needs are met.What are Parent Partnership Services?Parent Partnership Services (PPS) arestatutory services offering information,advice and support to parents andcarers of children and young peoplewith special educational needs (SEN).PPS have a role in making sure thatparents' views are heard andunderstood and that these viewsinform local policy and practice.PPS are based with a voluntaryorganisation, with the Local Authority(LA) or Children's Trust.As statutory services (ones that haveto be provided by law) PPSs are allfunded by their Local Authority.However they are all expected to be at'arms length' of the LA and to provideimpartial information, advice andsupport to parents. Some services areWritten byIsabel Baumberbased outside of the LA with localcharities/organisations, some arebased in LAs but in their own buildings,while others may share offices withother LA services such as schools,children's centres, support services,etc.What services do Parent Partnershipoffer?The services offered by individual PPSwill vary but all will be able to provideinformation and advice about:• How special educational needsare identified and assessed byschools and the local authority.• Who parents can talk to in a schoolor LA about their concerns.• The SEN Code of Practice, thestatutory assessment process andstatements.• Parents'/carers' rights and responsibilities.• Meetings and reviews about achild's needs.• How progress is monitored andreviewed.• What parents can do if they are nothappy with a decision made abouttheir child's SEN.Please don't hesitate to contact the LHMoffice if you have any queries about anyaspect of education. We have bookletavailable on 'Early Years and InfantSchool', 'Junior School' and 'Transition toSecondary School' which are availablefree of charge to members. We also havea more detailed pack for families whofeel that their child many need additionalsupport in school.We also have a Benefits Booklet, whichcovers a whole range of ideas.We'd be really pleased to hear about anyother ideas members have.How does Parent Partnership work?PPS are free, impartial local services.PPS work directly with parents andcarers of children and young peoplewith SEN.PPS provide confidential information,advice and support.PPS work in partnership with parents/carers, schools, the local authority andother agencies.PPS support parents to inform andinfluence local policy and practice.PPS enable parents and carers tomake informed choices and decisionswith confidence.How can I find my local ParentPartnership?The national website is www.parentpartnership.org.uk. Information forthis article was taken from this website.On the home page, there is a map to linkto your region and local contact details.Please feel free to contact the office withany queries. We can also put you intouch with other families who may haveexperienced similar situations to you.12BenefitsDisability Living Allowance (DLA)There are many changes beingproposed to the benefits system, andat Little Hearts Matter, we will do ourvery best to keep you informed ofchanges, and influence those changeswherever possible.We understand from our members thatit is getting more difficult to successfullyclaim DLA at the moment, so wouldlike to offer the following suggestionsto help you.Ask for the LHM pack to give you ideasof sample answers to adapt.Remember how important it is to stresswhat is different about your child's careneeds when compared to a hearthealthychild of the same age.Think carefully about the people youinclude to provide extra information aboutyour child - it is very likely that the DWPwill actually contact them for a report.Ask for help e.g. from LHM, your healthvisitor, a local charity, Citizens AdviceBureau, etc. You can also ring theBenefit Enquiry Line (0800 88 22 00)for help with completing the form.Ask for a second opinion before yousend the application form in.Keep repeating information if it isrelevant to the question - don't worryabout having already made the samepoint earlier in the form.Get supporting letters from peoplesuch as LHM, health visitor, nursery,school, Cardiac Liaison Nurse,community nurse.Make the most of the last page andpaint a full picture of your child, theirdifficulties and how it impacts on thefamily.Always keep a copy of your form whenyou send it in.Remember that the person who readsyour form is not a healthcareprofessional - they may not even haveheard of your child's diagnosis before,so tell them everything about how thecondition impacts on everyday life.If you are renewing your claim, you willonly be sent one letter (six monthsbefore your award runs out) - therewon't be any other reminders. Beprepared for the renewal process totake longer than it has in the past.Don't give up! If you are not awardedthe level you think is appropriate, or ifyou get a letter saying you are noteligible at all, the first thing you can dois phone to ask for a reconsideration,where someone different will look atyour claim. You can also write to startan appeal. It is sensible to ask for anexplanation of how the decision hasbeen reached, and also for copies ofall the information they have aboutyour child, including medical reports.Information about DLA can be foundon the government website www.direct.gov.uk - look at the 'Disabledpeople' section, then see the 'Financialsupport' menu. You can also contactthe Benefit Enquiry Line on 0800 88 2200.

Ask the ExpertsHere we ask professionals to answer some of the commonquestions asked by our members.Suzie HutchinsonChief ExecutiveLittle Hearts MatterWe are planning a holiday abroad and we areare wondering where it would be safe to go?It is always lovely to be able to plan aholiday abroad but it is also importantto look at each destination, the travelto the country and the services that areavailable when you get there beforebooking anything especially when youhave a child with a cardiac disability.Here are some tips to think about whenplanning your holiday.1. Speak to your cardiologistFirstly it is essential to check that yourchild is well enough to go abroad for aholiday. Speak to your cardiologistabout holidays when you have aplanned outpatient's appointment. Ifthey are happy for your child to goabroad start looking for suitabledestinations.2. How far away is your destination?Low level, short flights are possiblefrom early on but many cardiologistsprefer that long distance high altitudeflights are not attempted until after thethird (Fontan) stage of surgery.3. Will you need oxygen on the flight?Your cardiologist will tell you if youneed to plan to take oxygen with youon the flight. All aircraft have a smallbottle of oxygen on board but if there isan increased risk that your child mayneed oxygen during a flight they willexpect you to supply your own. Thismay affect the cost of your holiday asyou may need to book an extra seat totransport the oxygen and you will needto arrange to refill a bottle at yourdestination if you have used the supplyon the flight.4. Which are the safest destinations?When planning where to go on holidayit is important to consider not only thebeach, pool and/or sunshine, you alsoneed to look at the medical careprovided locally and how your childwould be transported to a hospital ifthey needed more extensive treatment.Island holidays may not be a good ideaif transport to medical care on themainland is not easy.5. What sort of insurance do I need?Whenever you travel abroad it is agood idea to ensure that you have fullmedical insurance, but it is essentialwhen travelling with a child who has adisability. Insurance companies willexpect a detailed letter from yourcardiologist that states that your childis fit to travel. When planning yourinsurance make sure that there isprovision for your child to be flownhome if needed and that one parentcan accompany them.6. How hot is your destination?Although children with heart problemslike warm water to swim in and lovelysunshine, if it is too hot they canbecome dehydrated very quicklyespecially if they are on diuretics.Think about the heatat the time of year youare travelling. Augustholidays can beblisteringly hot. If yourchild is on Warfarin,dehydration can affecttheir INR levels. It isuseful to take aCoagucheck machinewith you on holiday tocheck dosage andclear instructions onchanges in each dailydose if the INR levelchanges.7. MedicationMany of the children'smedications need tobe kept refrigerated so check to see ifthere is a fridge available in yourroom. Think about how muchmedication you wish to take with youand plan in advance your medicationrequest from your doctor.8. Local travel?Think about how you are going to getaround when you get to your holidaydestination. Is the beach near yourhotel or holiday home? Do you want togo exploring? Will you need apushchair or a wheelchair to makesure that your disabled child can takepart in everything whilst you are away?9. Holiday typeIf your holiday is an activity based one,will your disabled child be able to takepart safely? How will you split activitiesif your heart-healthy children want todo something different?Remember that the LHM team areavailable if you need any help withplanning your holiday.13

Grandparent's pageChris Barrett shares a snapshot of life as a grandparent toThomas and Joe.Written byChris Barrett14August Bank Holiday 2003 isetched in my memory as theweekend I silently sobbed for ourunborn grandson.Sally and Spencer happily went totheir local hospital for their 19 weekscan and discovered that their muchlonged for second child had a heartproblem and heard the devastatingwords of the obstetrician ‘let’s see ifthis pregnancy is viable’. A subsequentappointment with Dr Wright at theBirmingham Children’s Hospitalconfirmed Hypoplastic Left HeartSyndrome, a very complicated and lifethreatening condition, whereupondetails of the charity Little HeartsMatter became known to the family.From that moment on our liveschanged and like the famous story wewere on a different journey. Not thejourney planned for our family to thewonderful fun-filled places but theinevitable journey of hospitalappointments, anxious times and anunknown future.But .... not wanting to be ignorant ofthe facts and future we searched thewebsite for information and founddetails of the Little Hearts Matter OpenDay at The West Midlands Safari Park.This for me was a lifeline, once westepped through those doors Sally andI were welcomed by the staff andintroduced to families. We sawchildren running round, having fun,looking ‘normal’. We listened intently toMr Barron’s words and the currentsuccess rate of the Fontan procedure.This gave us hope and encouragementand from that day on we continued tohave hope, receive the encouragementand love every minute of Thomas’s life.Whilst Sally continued to remainpositive after diagnosis and during herpregnancy we all naturally worriedabout the future and were concernedabout Joe, aged 3, who was so lookingforward to having a baby brother. It isparticularly hard for siblings beingwithout their parents for weeks, if notmonths and this is where we were ableto offer our support and love and care,providing as near normal a life aspossible for Joe. Sleep didn’t comeeasily and everyone was stretched totheir limit but nothing compares towhat Thomas was going throughand withstrength andprayers Thomascame home andlife as a family offour began.We are alwayson hand to offerour help andsupport and ourfirst evening leftalone to babysitwas a total trust offaith. We will neverforget the line up ofdrugs with labelsand clearinstructions, notsure who was themost nervous thatevening.After many operations at BirminghamChildren’s Hospital and the expertongoing care, Thomas is enjoying avery happy life and gives daily joy toeveryone around him. Thomas hasintroduced us to numerous holidays atCentre Parcs where he lovesswimming, the play areas and arcades.His favourite holiday so far is Sol a GoGo Camp site in France where hescooted on his amazing micro scooterlate at night and enjoyed the clubnights till 11:00pm!Every new experience provides uswith great pleasure and the joy he hasgiven us help compensate for therealisation that there is no cure forHypoplastic Left Heart Syndrome butthere is hope, continual research andThomas is happy.We are all conscious of the importantrole the Little Hearts charity plays inproviding relevantinformation andsupport to newparents and thosereceiving thedevastatingdiagnosis. Thissupport can be alifeline to familiesand we wouldencourage allparents to take theirhelp and adviceand never ever feelalone.We have alsosupported the FunRun over the yearsand if I can do it socan you!Colin was ableI joined Phoenix Trading because I was swith the product. It is such a beautifulquality and value for money. I really apprean easy source of birthday cards, giftwrayou cards at exceptionally good value.I have been raising funds for LHM overyears and just by ordering through me at wwtrading.eu/chrisbarrett you can help.Please ask for a brochure or order direpenny of the profit will go to LHM.

to offer advice onfundraising andserved as a Trusteeand has recentlyoffered to be anambassador forLittle Hearts Matterin order to promotethe charity to thecorporate marketand the localcommunity,working with IanAsh.Sally took a career break as aPhysiotherapist to care for Thomas inthe early years but when he startedschool Sally was able to graduallyincrease her hours and we are morethan happy to help in collectingThomas from school and being able tocare for the children in school holidays,etc.Thomas loves school and he excelsat mental arithmetic, has an incrediblyenquiring mind and has a greatknowledge of the mechanics of my car,brought about by his interest in readingthe Renault manufacturer's manual onour way home! He is particularlypopular with the girls in his class basedon the number of party invitations hecomes home with. Only last week Iwas particularly proud to see Thomasbeing awarded a certificate inassembly for his ‘Big writing’ and anentry in the Golden Book.Joe is extremely caring towards hisbrother and whilst they have a healthycompetitive edge on the X Box Joe iscurrently teaching Thomas ‘selfdefence’. Duvets and cushions areplaced on the living room floor whilethey create a wrestling ring andThomas is deftly developing his ownwrestling moves. Joe is proud thatThomas is learning how to defendhimself if necessary, while we look onwith trepidation. I’m not sure Thomasactually enjoyed it initially but Joe wassure he needed the skills and Thomasnow gives as good as hegets.Thomas is very consciousof healthy eating and one ofhis most significantachievements for us isbeing our mentor insuccessfully losing over 5stone in weight betweenus. Being a huge fan of theWii Thomas becameworried and quite upset todiscover I registeredoverweight and Colin obesewhen doing a body test.We were encouraged to doa daily body test andThomas would note ourprogress and encourage usto have a healthier diet – itworked and now we daren’tstray, having reached our‘ideal’ goal.Thomas is so proud of us but he willnever know just how proud we are ofhim.Calling allGrandparentsPhoenix Cardso impressedrange, goodciate havingp and thankthe last fivew.phoenixctand everyThis page has been addedto give our very importantgrandparents the chance toshare their story, why they dothings for LHM and what theirinvolvement is.Contributions can be as big oras small as you like, the mostimportant thing is that wewould love to hear from you.If you'd like to be a part of thenewsletter just email Deb ondeb@lhm.org.uk or give us acall - 0121 455 8982We are really looking forwardto hearing from you.15

Feature16On Saturday 12th March LHM held its Annual GeneralMeeting and Open Day at the Bethel Convention Centre,Birmingham, below is an overview.We attended our first Open Day in2010 when Naomi was about sevenweeks old, and she spent most of theday asleep in my sling, which was solovely. Things were a little differentthis year, as we now have a toddlerrunning about enjoying herself, andgetting into everything, particularlywhen she saw Barnaby Bear sat onthe welcome table.This year's Open Day was held atBethel Conference Centre, whichwas an excellent venue. The stafflooked after us well, and it was veryeasy to get to. Naomi particularlyenjoyed the huge lobby that wasgreat for running around.We were very eager to return tothis year's Open Day. One of the bestthings about LHM is the relationshipsthat are built, and the opportunitiesto talk to people who understand.Where else could you have asensible conversation about what todo if your toddler won't co-operatefor an echo?! Last year we had justbeen through the antenataldiagnosis, birth and stay in hospitaland got great encouragement fromattending the Open Day. It was sowonderful this year to catch up withfriends we made last year, and findout how their little ones aredoing,as well as makenew friends, andWritten byTracey Baker and Joe Hollingworthput faces to names from the LHMforum.The main topic of discussion wasthe Safe and Sustainable review,which was the topic first session. Itwas quite eye opening to see howthe quality of care differs across thehospitals, and how different eachperson's experiences have been. Itreally brings home the importance ofmaking our voice heard in theSafe and Sustainable process.Suzie gave a clear explanationof the different options and agood discussion followed.After the AGM we had reports fromthe quality of life study and the youthresearch which was very interestingand thought provoking, especiallyhow the views of parents and childrencan differ! This cutting edge researchcould make a real difference to thecare of our children in the future.Over lunchtime Ian Ash, along withEmma and Shelagh, ran a sessionabout the new ambassador scheme.The idea is to have LHM representativesacross the country to help with theoutward facing side of the charity. It wasa really productive discussion, andmade me feel really proud to be part ofa charity that is so caring,and so well run. Theambassador schemeshould hopefullyreally enhancethe work ofLHM.In the afternoon we attended thesession for parents of 0 - 5s, whilsteveryone else went off to enjoy thesession working with their childrenand discussing issues that come upwith the different age groups. The 0- 5 session was a great opportunityto share experiences, and get advicefrom friends who have been throughsimilar issues.The children's provision wasexcellent. Naomi had a super time incrèche, and the youth and childrenhad a varied and exciting set ofworkshops. It is such anencouragement seeing the otherchildren and teenagers at the OpenDay. It gives us such hope for thefuture to see the teenagers doing sowell. The youth produced an excellentLHM Open Dpuppet show at the end of the daywhich was enjoyed by all.This year we booked a local hotel sowe couldstay for theevening entertainment. The eveningsocial was fantastic, one of the bestbits, and chance to eat, chat andswap stories whilst the kids runaround in a safe place. Naomireally enjoyed the magician (wewere most amused by his brummieaccent, pronouncing 'line' with an 'o'in it!).We look forward to the next OpenDay. Thank you to all the team fororganising it.See you next year!

Relaxing with my mates,grabbing a bite to eat,having a laugh - anormal Saturday, right?That's what I thought when my mateSam asked me if I wanted to go tothe 'Little Hearts Matter' Open Day inWest Bromwich: a chance to meetnew people and have some laid-backfun. I entered the doors to the aweinspiringBethel Convention Centre,not knowing that I would leave withorange hands and a piece ofcardboard that looked like HarryPotter.It's a long story.ay and AGMTo kick off the morning, we set upan ice-breaking session. I wasexpecting a circle of intimidatingeyes staring down every person whowas forced to stand up and nervouslymutter, "H...h...hi my name is... andI'm f...f...from..."; instead we wereseparated into age groups and askedto reassemble a butternut squash.Yes, it's exactly what you heard.Through this, I met many new peoplein a fun way, even though my agegroup (the 15-18) lost to the youngestage group (10-12) who weremysteriously quick at repairingvegetables!The groups werebrought together totalk about the problems they facewith their heart conditions and how'Little Hearts Matter' could help. Myeyes were truly opened to the day-todayproblems of coping with activitiesI would find menial, such as exercise(light exercise anyway!), whichbecame a struggle with a heartcondition. But these difficulties werehugely outweighed by how supportivethe group was with each problem,telling their previous experienceswith the problems and howthey themselves got throughthose situations.While the younger membersof the group prepared apuppet show to entertaintrustees and parents, my age groupformed the Youth Council to discusswhat could be done to improve thecharity. Within five minutes, the YouthCouncil had prepared a pitch to theHead Trustee, with their plans for thefuture and how to finance them. Tosee real decisions being made bypeople my age was incredible! Eventhe Head Trustee was blown away byhow well thought out the pitch hadbeen. My only contribution was ahandshake to the Head Trustee -unfortunately this was when I realisedmy hands were still covered inbutternut squash.The Youth Council then met up withcardiologists and psychologists for arevealing question and answersession. It was fantastic to seepeople my own age not only dealingwith medical issues so seriously butalso asking some thought provokingquestions and taking in every wordfrom the professionals' mouths.Astounding to think that kids asmature as medical experts werehelping put on a puppet show fiveminutes later! Each age grouppresented an everyday issue in theform of puppet theatre, ranging fromPunch and Judy at school to the castof 'In The Night Garden' going tohospital for the first time. Anyonewho missed the group of 15 -18 yearolds' puppet production of 'HarryPotter and the Half Prince' trulymissed out!So a regular Saturday? Oh no,much better! The people I met at theOpen Day had the biggest hearts inthe world. I'm not going to forgetthem or how they helped each otherout with warm advice and brilliantsmiles, or how they knew exactlywhat they needed and how to givehelp to every child out there with aheart condition, or how they hadjoyous, friendly fun. And I'll neverforget the sweet, sweet smell ofbutternut squash.17

Cousin Trey UsesPedal Powerto raise £400Ten year old Trey Campbell wanted to give something back to the charity that had helpedhis three year old cousin Sam's family from when he was diagnosed with Tricuspid Atresia.So he set himself the challenge of pedalling 20 miles from Bissoe to Portreath.After weeks of collecting sponsorship and an appearance in the local paper, the day forhis gruelling bike ride arrived. With grim weather forecast, Trey and his mum Rachelwere up and out early to get a good head start. A small equipment error meant theywere unable to drive to their starting point so they decided to cycle, adding another 10miles onto their journey and some very big hills, but Trey's determination made himunstoppable.From Bissoe to Portreath they enjoyed flatter tracks and beautiful scenery, and aftera break and some well earned pasties they headed back. With the home stretch insight Trey took the opportunity to ride through all the muddy puddles and finally made it hometo Truro six hours later - tired, filthy but happy.On completing the ride Trey said "I wanted to do something to help my cousinSam, because I think he's great!".Thank you TreyFour Bikes And A CoconutRatJon heard about the charity throughCourtney's parents who have receivedsupport from us since seven year oldCourtney was first diagnosed withHLHS. Inspired by his god daughter,Jon Allanson joined by friends ColinPlatten, Mark Dobbs and Carl Holidayset themselves the task of cyclingacross Vietnam to raise money for LHM.Jon says " None of us had rode a bikesince our school days doing paperrounds so we all had to go out and buyone. Training started about six monthsbefore the event and was tough at firstwith short uphill sessions but slowly wegot to cycling up to 40 miles."Covering an average of 65km eachHorsing Around For LHMday, they travelled through hundreds ofsmall villages where the children wouldcycle alongside them to practise theirEnglish. Their guide showed them lotsof different points of interest along theway and introduced them to locals whowere curious as to why they were cyclingthe long route when there was a truckfollowing behind them! They alsoenjoyed two nights staying with localfamilies where they tried delicacies suchas elephant eared fish and coconut rat.We'd like to say a huge thank you toJon, Colin, Mark and Carl for their hardwork in raising money for us. Thank you.Tough Guy With Big HeartNed Wheatley's grandad, John Austin and men andwomen from around the world descended upon MrMouse's farm to see if they have what it takes to becomea 'Tough Guy'! On a cold January morning John provedjust how tough he was whilst showing how big his heartis, raising money for his two chosen charities, LittleHearts Matter and Help the Heroes Sanctuary. Checkout the challenge, it is incredible - www.toughguy.co.uk.We salute you John...thank you.A crazily dressed team of eight in Chippenham werebraving the cold and wet weather to take part in theBadminton Horseless Trials. Abbie Robinson joined byfriends and family, donned the essential gear such astrainers and LHM t-shirts (and the equally importantpink tutus and plastic body parts) to run, climb, splashand shiver their way round the 5 mile course, whichsees competitors running and climbing the courseusually undertaken by horses. Abbie says, “We decidedwe wanted to raise money for LHM because of Malcolm'scousin, Adrian Robinson & his wife Rachel. Their four year old son Samuel was bornwith HLHS. Both Adrian and Rachel have spoken so highly of the charity.” “Samuelis such an adorable boy and we just felt we wanted to say a big thank you on behalfof the extended Robinson family for all your work.”The team has already managed to raise an incredible £800. We’d like to say ahuge thank you for all of the following, pictured from left to right above:William Petty-Fitzmaurice, Geriant Williams, Scott Dunlop, Malcolm Robinson,Nicola Williams, Abbie Robinson, Rebecca Petty-Fitzmaurice. Also to final teammember Hugh Lacey who isn’t pictured.IN BRIEFThank you to the ongoing support ofthe East Midlands Public AuthoritiesFootball League who have supportedLHM for many years raising anamazing £3,251 in memory of littleMaddison Holland.Big Thank you to Cora Banyard'sGranddad and Nana who held a raffleat theirFreemason'sLadies Nightraising nearly£600. Hugethank you to youboth and AuntyJude, UncleNigel and cousinAlexander.Many thanks to all the EdinburghWoollen Mill and Helen Kemp whoorganised a 'Guess the name of thebear' event raising £454 in memory ofTyler J Llewellyn Jones.We would also like to send sincerethanks to all at Pelican Lodge,Plymouth and Philip Oke, who asMaster of the Lodge nominated LHMto receive a donation of fundsbecause a friend of his, Pete Breslan'sgranddaughter Imogen has receivedsupport from LHM.19

Zipper ZoneBelow Jon gives an update on the youth research that has beenundertaken over the last two years.Written byJon BrunskillYouth Development Officer20We know that the physical, psychological and emotionaldevelopment that an adolescent goes through duringteenage years can create huge challenges. Add into thisturmoil a complex heart condition and the anxiety andconfusion is only compounded. Little Hearts Matter hasworked closely with families affected by single ventricleheart defects (SVHDs) for over twenty years, but to datethere is very little primary data that has been collected fromthe young people in which they are able to voice the physicaland psychological effects of these non-correctable heartconditions.Anecdotal evidence from parents and teenagers wouldsuggest that there is a clear link between living with a SVHDand struggling with challenges above and beyond those ofa normal adolescent. Often the support needed to ensurethat these young people can reach their full potential isinconsistent or simply not existent. The aim of the ‘How IFeel’ Study was to provide quantified data supported byqualitative experience that would support the need forchange within medical care, education services, careersupport and social services. We also hoped to identifychallenges that may be incidental or occasional.Over the last two years the LHM Research Team -consisting of Suzie Hutchinson, two parent trustees, twoclinical psychologists, a youth worker and myself - haveworked to create an accessible questionnaire targetingissues which have been identified as obstacles to youngpeople developing towards an independent life. Thequestionnaire was broken down into the following sections:• Hospital and Medication• Family and Friends• School• Feelings and…stuff• Big Kids (for young people in Year 9 or over)• Diet and Food• Sports and Activities31 young people, aged between 10 and 18, took part inthis questionnaire. Young people treated at Southampton,Birmingham, GOSH (London), Evelina (London), Alder Hey(Liverpool), Glenfield (Leicester) and Freeman (Newcastle)were represented.The participantshad a range ofSVHDs, includingHypoplastic LeftHeart Syndrome, Pulmonary Atresia, Tricuspid Atresia andUniventricular Heart. Analysis of their response is currentlyunderway, however initial results would suggest that thedata supports anecdotal evidence.For example, of the 31 participants, 26 attended amainstream school, and of these 26 only 10 receivedlearning support.• 26/31 attend mainstream state schools• 16 receive no support• 10 receive supportThis data will be supported by qualitative data collectedthrough telephone interviews with young people with aSVHD. The aim is to illustrate the figures with powerfulexplanations from the young people directly affected bythese conditions.All young people aged 10 – 18 will be offered theopportunity to take part in this interview, and we hope toreceive your support in our endeavour to produce a rigorousaccount of how it actually feels to live with a heart conditionas an adolescent. The outcomes of this project will be moreaccurately targeted service provision from Little HeartsMatter, as well as an invaluable tool for the entire spectrumof care givers to these young people.

The reviewEvery issue we feature a review of a book, website or filmthat our members may find interesting.In this issue, Lindsey Hooks reviews 'Before My HeartStops' written by Paul CardallWritten byLindsey HooksCan be purchased from Amazon fromaround £9.98 - www.amazon.co.ukwww.paulcardall.com"I was born with half a heart.God made up the difference'Paul Cardall was born in 1973 withTricuspid Atresia, a single ventricleheart condition and was only givendays to live. He defied medicalexpectations and endured a series ofsurgeries and childhood illnesses.While in High School tragedy struckand his best friend was killed in a caraccident. After having quit playing thepiano a decade earlier Paul tookcomfort in music and composed amuscial tribute. He is now an awardwinning pianist and number 1 Billboardchart artist from Salt Lake City, Utah."The best way I know how toexpress the raw deep emotionsI've experienced is through thepiano music I create."Paul is a dedicated Mormon fromSalt Lake City, Utah where he liveswith his wife and daughter, Eden. Thisbook is essentially a diary of his day today life from when he was put on thetransplant list up to the point, 385 dayslater, when he received his new heart.Whilst waiting for his new heart Paulwas in end-stage heart failure, he wason oxygen 24/7, took a daily cocktail ofdrugs, spent several nights in hospitaland long periods where he wascompletely exhausted. If you haveread his blog 'Living for Eden' (namedafter his daughter) you will already befamiliar with the majority of thematerial, however, I only becameaware of him on Facebook when hisbook was being released.There is no doubt that Paul's story isone close to all our hearts, his positivityand attitude is very uplifting and is aninspiration to everyone, not just thosetouched by heart disease. Theexample he sets on how to approacheach challenge is a lesson to us alland is humbling especially when youthink of trivial issues which take ourtime and energy day to day.It is very apparent that Paul is adeeply religious man and hisresounding faith influences him andimpacts everything he experiences. Ifyou are religious I'm sure you will beable to relate to what he says, however,it is a very big part of the book and theconstant references can be a littledistracting. That said, there is nodoubting his sincerity and it is apparentthat his faith has helped him, and thoseclose to him, cope with the difficultiesthey have had to go through.Overall I enjoyed the book. It isalways a pleasure to read aboutpositive people with heart conditionslike our children. I came away feelingthat whatever is around the cornerthere is no harm in looking at the 'glasshalf full' and what can be done, ratherthan all the challenges and struggleswe inevitably face. Personally I wouldhave liked less of a focus on thereligious aspect however, you have toappreciate that this is who Paul is andit doesn't detract from what a positiveand uplifting role model he and hisfamily are.I will finish with an extract I foundwhile researching about Paul Cardellbefore I bought the book. Dr AngelaYetman and Dr Melanie Everitt arePaul's paediatric cardiologists. For methis sums up both Paul and his family'sapproach to life entirely and sends apositive message to all us heartparents."It's the most severe heart diseasewe see," explains Dr AngelaYetman. "He is alive and he's alsodone so well for himself." She saidCardall's "personality andtemperament with an optimisticoutlook have helped him survive,as have his parents, whosewillingness to let him experiencelife rather than sheltering him forfear of the health consequences.""They've made plans for thefuture," Everitt said. "Some kidsand parents see this (disease) as adeath sentence... We want to givethem hope." Medicine andtechnology have advanced to thepoint, that such patients can lookforward "not just an extension oflife, but a full and active life." shesaid.21

Medical22The article below looks at Protein Losing Enteroopathy whichis a complication that can occur following a Fontan procedureCan you make a difference toProtein Losing Enteropathy(PLE)?I am David Simpson, a medicalphysicist by training, husband to Helenand father to Alasdair (10), Eleanor (5)and Catherine (2). Alasdair was bornwith Aortic Atresia and had threesurgeries before the age of three tocreate a Fontan circulation. Herecovered well and developed into abright smiley boy who attendedmainstream school.Written byDavid SimpsonSuzie HutchinsonFast forward to 2007 and Alasdair,who had been in great health, wasdiagnosed with PLE. Helen and I foundourselves in another paediatriccardiologist's office having the'breaking bad news' talk again.Alasdair was put on a new regime ofPrednisolone and Sildenafil and,though it was five long weeks beforewe left hospital, he went back to fulltimeschool with the same energy hehad before.As a health professional withresearch experience, I started lookingat the scientific literature around thiscondition. I discovered that the use ofSildenafil had been reported in theliterature for the first time only sixmonths before Alasdair needed it. Ialso came across a small charity inBuffalo, USA, the Children's HeartFund (CHF) which is committed tocuring protein losing enteropathy. Thecharity was set up by the family ofColin Colson, a child who sadly died ofPLE.I had so many outstanding questionsI decided I wanted to talk to the expertsface to face and was lucky enough tobe given a small travel grant by myprofessional association and supportfrom my local hospital. I was verygrateful to be able to talk to SuzieHutchinson from Little Hearts Matter toconfirm that I was talking to the rightpeople.Children's Hospital ofPhiladelphiaI met with Dr Jack Rychik who gaveme two hours of his valuable time totalk about clinical care of children withPLE. He is setting up a single ventriclesurvivorship programme, a specialistclinic where Fontan children will beexamined by Gastro Intestinalspecialists as well as having their bonehealth assessed. This way, any signsof PLE can be spotted and treatedearly. He has had a good deal ofsuccess using Sildenafil in conjunctionwith Budesonide, a steroid used totreat Crohn's disease.We talked about how best practicecould be shared throughout the worldof Paediatric Cardiology and whatdirections future research may take.Dr Rychik talked about how thesupport of the CHF had been importantto him and that an InternationalSymposium organised by CHF hadhelped co-ordinate research efforts. Iwas reminded how small the worldofpaediatric cardiology was when Imet Dr Gil Wernovsky in the corridor,one of the experts Suzie had told meto look out for!Sanford-Burnham Institute, LaJolla, San DiegoOne coast to coast flight later I met upwith Dr Hudson Freeze and his group.I saw the plaque he has on the lab wallacknowledging the support of the CHFand also the picture of my family hehas on his group's notice-board! Hisgroup had cleared two hours to listen

to my questions and ideas about PLEas well as inviting other experts fromthe centre. We talked about the currentstate of research into the biology ofPLE, the clinical trial of modifiedHeparin which they run and futuredirections which could be examined.I was very grateful to have theopportunity to have world expertslisten to my ideas. We talked abouthow best to look for a genetic factor forPLE, how best to co-ordinate researchand whether there could be a role fornovel inflammatory bowel diseasetreatments in PLE.Dr Freeze was very grateful for thesupport the CHF had given his team.Financial support had put him in aposition to bid for major grant funding.His contact with Jim Colson, CHF'sscientific advisor and Colin Colson'sGrandfather, was instrumental ingetting him interested in the field.Dr Freeze put me in contact withSimon Murch, a UK expert in PLE andalso drove me around showing me thesights of San Diego!Children's Heart Fund,BuffaloI spent another day travelling backeast before meeting the Colson familyon the last day of my trip.Tom Colson and I swapped 'heartdad' experiences whilst he took me tosee Niagara Falls. We talked abouthow best to collaborate and how acharity can help research and clinicalcare.This was more of a personal visit asmy main focus was to thank the wholefamily. Alasdair's treatment wastransformed by treatment only justreported in the research literature.Research doesn't just happen; it takescommitted top-class researchers,passionate clinicians and money!Talking to Dr Freeze and Dr Rychikbrought it home to me how much theColson family had inspired them intheir work and how much the financialsupport had meant in getting researchoff the ground. They made a differencefor my son.You can read more about my trip byvisiting phizz-ple.blogspot.comProtein Losing Enteropathy (PLE)Protein Losing Enteropathy meansthat protein is not being absorbedfrom food in the gut. We all needto absorb protein because ithelpwswith the growth and repair ofevery part of our body. Children withheart conditions need protein to helpthem grow and to help them repairafter treatments.PLE can be a side effect of Fontansurgery. It happens in about 5%of patients and normally does notoccur until some years after surgery.The signs of PLE are fluidcollection in the abdomen so anenlarged tummy but no weight gainanywhere else, fluid in the feet,increased breathlessness, loosebowel movements.This complication happensbecause of a rise in blood pressure inthe gut. Once the Fontan procedurehas been done the body's one pumpworks to push oxygen filled bloodout of the heart and around the bodywhere all of the oxygen is used tomake energy. The used blood thenreturns to the lungs, to pick up newoxygen, it flows there without its ownpump. In some children, especiallythose that have slow movement ofblood through the lungs, there is acongestion of blood around their gut.This congestion affects the take up,absorbtion, of protein.The treatment of PLE is muchdiscussed by cardiologists. Amixture of treatments are used as todate no one treatment is preferred.In the article left, medication isdiscussed in some detail but thereare also interventional treatments.Opening up the lung blood vesselsby ballooning them and then placinga metal mesh stent in place to keepthem open creates a better bloodflow through the lungs thus relievingthe back pressure to the gut. Theseprocedures can be done duringa cardiac catheter so no need forsurgery.Another solution can be to reopen,stretch or create a fenestrationbetween the Fontan into the heart.This can be done during a cardiaccatheterisation. When the Fontancirculation is created blood returningto the lungs flows either through atube, outside the heart, to the lungsor a wall is created within the heartto divert the blood from the lowerbody straight to the lungs. If thepressure rises in this tube it createsback pressure that affects the liverand the gut. If a hole, fenestration iscreated it acts as a pressure valvethat allows some blood to re-enterthe body circulation and divert fromflowing to the lungs. This takes awayfrom the lung circulation so relievingthe back pressure.If you have further questions aboutPLE and the range of treatmentsavailable, please talk to yourcardiologist at your child’s nextappointment.He's not reallyretiring!!Some of you may know that BillBrawn will be retiring from full-timework this year.Don't worry all you Mr Brawnfans he will in fact be continuing atthe hospital for four days a weekfor sometime to come.Bill is a great friend of LHM. Notonly did he pioneer the treatment ofHypoplastic Left Heart Syndromein the UK but he also has been oneLHM's Vice Presidents for manyyears, a role which has enabled himto raise the needs of LHM childrenand families in many areas.We are currently collecting bestwishes for a card.If you would like a short, stickersize greeting to be added to hiscard please either give us a ringMr William Brawnon 0121 455 8982 or email us atinfo@lhm.org.uk23

Feature24Last summer we sent out a questionnaire to all members toget your feedback on our current services. Below is asummary of your replies.Last summer, we sent out aquestionnaire to all members to getyour feedback on our current servicesand to help us plan for the future. Weare extremely grateful to everyone whocompleted the questionnaire - yourviews and opinions are really importantto us, for planning future work, andthey also help us when we are seekingfunding. Please contact the office ifyou'd like to find out more detail aboutthe results of this questionnaire andhow we are using them in our work.We received 72 detailed replies, frommembers in different parts of thecountry, and from families with differentage children. As well as the informationwe gained, we were lucky enough toreceive many offers of help - peoplewanting to learn more about differentvolunteering roles within LHM.Ideas for the futureWe were particularly looking forfeedback about the concept of theJourney to Independence, a way oflinking different services with awarenessand the need for fundraising.The concept was well understoodand well liked by members."[I] love the picture of [the] windingroad, [it] describes life with a HLHSchild perfectly. It is a journey,sometimes smooth, sometimesbumpy! Blind corners and newadventures, end point is unsure.""There are journeys and journeys -hardly a stroll in the park on asummers' evening - more of a hikeover the hills with the weatherclosing in behind you!"We also asked for feedback aboutideas for new services, which we arenow looking to fund. "I think your ideasat all stages are appropriate to thechildren's and parents' needs".The antenatal service expansionideas were well received. "I like theongoing follow up and support forwhatever path has been chosen."Members asked us to make sure arealistic picture of life was given,balancing hope against living withconstant worry.The proposals for 0-2 year olds werefor a feeding DVD and a pack to supportWritten byIsabel Baumberparents when going home from hospitalwith their baby for the first time. Both willmeet a need which members readilyidentify with. "Getting home fromhospital is very very daunting."For 2-5 year olds, families want theopportunity to "bring them [the children]into the circle of understanding" givingthe benefit of "preparation andinformation [...which] reduces stressand anxiety."Responses about the plans for 10-14year olds came from parents of childrenof all ages, including very youngchildren. A huge amount of concernamongst parents of younger childrenwas mentioned, for example "This is aperiod I'm very concerned about - that hewill learn to be responsible for himself -resist typical teenage temptations, andmore info can only help." and "I amterrified of the thought that [name] willstart smoking, drinking, etc, so if shewas part of a community where heartdisease is not 'abnormal' then hopefullyshe will feel able to make betterchoices for her health and interact withsome like-minded peers."All the detailed comments madeabout proposed services will beincluded in our project plans.Impact of our servicesWe were really delighted to hear yourfeedback about how much LHM hadhelped you at various stages of yourlives, especially at the time of diagnosisand also when seeking informationabout your child's condition.At diagnosis"I had no ideas what HLHS wasuntil I found the LHM website, ithad drawings explaining what myson's heart looked like.""Forums were so valuable and keptme going during the pregnancy.""LHM had a huge impact on ourlives. The packs that were sent tous had the answers we werelooking for. Information was sentvery quickly."As you looked for information"The LHM info is the clearest wecould find.""As LHM is specific to singleventricle, the information is tailoredand totally relevant."As you learned about the challengeswith feeding, development, schoolingand social support"I rang yourselves to ask if you hadany advice about [name] feeding,and you sent me an amazing pack.""I often use the message boards foradvice about school, etc. Don'tknow what I would do without it.""Everything I needed to know wason the website, I could email orphone LHM with any questions."As they move through theirteenage years"I was pleased that [name] couldfinally meet other children with thesame heart condition as him andhad someone to talk to...", "Workwith LHM has boosted [name]'sconfidence. It has helped us tounderstand the limitations she facesand the future medical issues.""You helped me feel normal, all theproblems we have experienced havebeen 'normal' for a heart child.""It is like my extended family. Thefriends have become good friendsbecause they truly understand whatit feels like to have one of theseprecious children.""Friendships with other families insame situation and all office staff,trustees, etc, feeling like part of ourjourney."AwarenessHere we presented a number of ideasfor raising awareness of single ventricleheart conditions and of the work ofLHM. These ideas including increasingthe visibility of LHM in hospitals, LHMworking as a voice for change, workingto grow our profile, and seeking acelebrity to help us build awareness.At diagnosisWhen looking forinformationLearning aboutchallenges0% 20% 640%

These ideas were almost universallyendorsed. In the answers to thesequestions, your frustrations about lackof understanding came across, andalso about living with a hiddencondition. "Every person we comeacross [...] always assumes it's a holein the heart - if only!"The question about whether youwould be happy for us to use scars as avisual factor to explain the children'sjourney was received fairly positively,but there were some more mixedreactions. Three-quarters of the replieswere positive. "Big emotional impact,and quite shocking to see on a child.""Every scar tells a different story andjourney, and who better than the oneswith the scars to tell you how it is!", "Ascardiac children appear normal, I thinkit's important to show just how serioussingle ventricle heart conditions are."Concerns included that it isn't specificto single ventricle conditions and it"suggest[s] a past event", Familieswere also concerned that the extent ofthe children's problems would not becommunicated simply using the scar asa visualisation. "The children are muchmore than scars, which are the least oftheir problems. [...] The real problem isthat their difficulties are usually notobvious, therefore can be forgotten."These concerns will be taken intoaccount as we work to developawareness plans.What does this all mean toLHM?We are so very grateful to you all foryour replies and sharing your personalexperiences. We will use thisinformation as we develop our newproject plans, and as we continue toseek funding for these projects. Wehave already used some of thisinformation as part of our presentationto Glaxo SmithKline and the King'sFund, where we were shortlisted for anImpact Award in the autumn of 2010.The results were announced at thebeginning of March this year, and wewere delighted to have received aHighly Commended award. We couldnot have done this without your support- thank you.0% 80% 100%Impact of our ServicesPositive impactNegative or not understoodNo reply or N/ABase 67, 70, 70iDirect Debit FormIf you would like to make a donation to Little Hearts Matter please fill out yourdetails below and send to:Little Hearts Matter, 11 Greenfield Crescent Edgbaston, Birmingham, B153AUI enclose the sum of £ __________ cash/cheque made payable to 'LittleHearts Matter'; Date: ____/____/____or:I wish to make a regular donation of £__________ per month from by Bank orBuilding Society account:Bank Name and Address:________________________________________________________________________ Payee details:____________________________________ Little Hearts MatterBarclays Bank Plc_______________ Postcode _____________Colmore RowSort code: _________________________ BirminghamAccount no: _________________________ 20 - 07 - 71Date to start: _________________________ 6304 6257Name: _________________________Thank youSigned: _________________________Email:_________________________We greatly value your support and would like to keep you informed through marketing literatureby post or email about our work or events.Please tick the box if you would prefer not to receive marketing literature.Add 25% to the value of your gift simply by filling in your full name, addressand postcode - we'll do the rest (please ensure you tick the relevant box):I am a UK taxpayer - I want Little Hearts Matter to claim back the taxon this, my enclosed gift, from the Inland RevenueI am a UK taxpayer - I want Little Hearts Matter to claim back the taxon this and all future donations until further notice.Name: __________________________________________________Address: ____________________________________________________________________________________________________Postcode: __________________________________________________Note: You must pay tax on your income at least equal to the amount LittleHearts Matter will reclaim.25

Over to YouThis page is just for you – the members of LHM.We want you to tell us what you’ve been up to!Send us your pictures or stories – achievements,things that have made you proud – however bigor small. If your child has swum a length of thebaths, conquered the bouncy castle, or gone offto their first day at school or nursery, we wantto know about it! We also want to include anyof your ideas to make life easier or recipes forfoods to tempt the children! This is YOUR page– if there’s something you’d like to see – let usknow.VEmail your pictures, stories, recipes and ideasto info@lhm.org.uk26• TOP LEFT: Akai Nounananou-Rodgers (5) celebrating her 5th birthday.• TOP CENTRE: Grace Lee (5) and her brother Harry having fun at the beach.• TOP RIGHT: Ellis Holtom (1) celebrating his first birthday, and looking like hereally loves his zebra!• MIDDLE RIGHT: Morgan Davies (3) just about to set out for his first morning atnursery school.• MIDDLE CENTRE: Naomi Baker (1) celebrating her first birthday andconcentrating on the task in hand - opening those birthday pressies!• MIDDLE LEFT: Sarah Haselgrove (18) showing off her huge 18th birthday cake.• LEFT: Samuel Robinson (4) enjoying his swimming lesson.

A Member's TipFree Carer's Entry to National Trust PropertiesLisa works for the National Trust and sent this in via our websitemessage boards.All National Trust (NT) properties allow free access to the carerof a disabled person. Additionally if you are sick of turning upand having to explain you are a carer (especially when yourchild doesn't look disabled) you can contact the central officeof the NT for an 'Access for All AdmitOne Card' this is issued in thename of the disabled person and so can be used by any careraccompanying that person, and just show it on entry (but youdon't need to have one to gain free access.Contact details for the Access for All Office are: - The NationalTrust, Heelis, Kemble Drive, Swindon, Wiltshire, SN2 2NA,telephone: 01793 817634, email: enquiries@nationaltrust.org.ukThere is a special NT handbook for Access for All, whichdetails special facilities and access issues, this information isavailable on the NT website (www.nationaltrust.org.uk)The NT for Scotland is a separate organisation, so Lisa couldn'tcomment on their policies, but it does cover England, Walesand Northern Ireland.Barnaby’s Big AdventureWell, where hasn't Barnaby been in thelast few months? His tux dry cleaning bill is throughthe roof and he even invested in a new pair of shadesfor all the sun he has soaked up - with t-shirt and teddysunscreen of course - he's very sun safe.His first big trip was with expectant grandparents Christine andJohn Highams who kindly offered to take him with them on their touraround Tonga, Australia, New Zealand and Hong Kong. Bookedseveral years in advance, Christine's grandson Zac (HLHS) wasdue whilst they were away so she took Barnaby to spread the wordabout LHM and so she could show him the photos when he wasolder.Barnaby had a fantastic six weeks. In Tonga he not only enjoyedthe scenery but a boar ride and a bit of snorkeling; in Australia hetook in the sights of Sydney Opera House, Bondi Beach, did a littlesurfing and went on an outback adventure meeting sloths, crocodiles and a koala(whose miniature cousin stowed away in Barnaby's backpack and is now living inour office - shh, don't tell anyone). Then in New Zealand and Hong Kong heenjoyed more sun, sea and sand before having to return very suddenly to the UKfollowing news of baby Zac's birth.Baby Zac Abram bravely battled with his condition and a further complication tohis heart for six hours but sadly passed away the following day. Barnaby stayedwith the family during this terrible time and, as he was looking for a middle name,decided to become Barnaby Zac in memory of such a special little boy and theirfamily. Look out for his new name on his passport.But with sand still fresh between his toes, Barnaby was restless again so he gotsuited and booted and headed off to meet Hollie Raffo, a little girl with HLHS inStaffordshire. She very kindly took him to her mum and dad's wedding where hegot to drive the limousine and play with lots of children at the reception. He alsomet the Martins who wanted to take him with them and their Austin Sevens clubto the Isle of Wight in September. It's in his diary! Pictured are Barnaby with thebride and groom Kirsty and James, and little Hollie.Before he had time to draw breath, he was off to yet another wedding in Waleswith Auntie Heidi and Uncle Carl. Their niece Madeline Williams, who hasTricuspidAtresia, very kindly invited him along to join her as bridesmaid. Madeline almost outshone the bride in her bright pink dress and Barnaby was very jealous of UncleCarl who looked very dashing in his uniform, having recently returned from asecond tour of Afghanistan.He enjoyed a quiet Christmas before whizzing up to Scotland to stay with DanielButler and family. The Butler family normally reside in Switzerland so, notonly did Barnaby get to enjoy the sights of Edinburgh, they then took himhome with them - two holidays in one!Highlights included mooching around Edinburgh with Daniel and AuntyPhyllis, a trip to the beach (sunglasses weren't needed this time though)and then back to Switzerland for some skiing - his first time on the slopes.From Barnaby and the LHM team we would like to say a huge thank youto the Highams, the Raffos, the Williams and family and the Butlers for takingsuch good care of him.If you'd like to share your trip with Barnaby email info@lhm.org.uk with whenand where you are going away and we'll see if he can make it.In Tonga, Australia and New ZealandMadeline Williams with AuntyHeidi and Uncle CarlHolly, Kirsty & Jim RaffoIn Scotland and Switzerlandwith the Butler family27

Little Hearts Matter11 Greenfield Crescent, EdgbastonBirmingham, B15 3AUTelephone: 0121 455 8982;Email: info@lhm.org.ukNoticeboardVBig Fun RunLHM PublicationsVFor the third successive year, Little HeartsMatter is proud to be part of the Big Fun Run,a series of charity run events held in townsand cities across the UK. All events are 5k andpeople take part to support a number of differentgood causes.Last year we had over 50 people take part acrossvarious events raising over £2,000. This was afantastic achievement and it would be fantastic ifwe could match or even beat it this year.Sign up and meet up! Several of you told us howyou found the Big Fun Run a great chance to meetup with other families local to you and in Glasgow awhole group met up to run together.Once you register we can let you know if anyoneelse is running for LHM in the same event.Fun RunsLiverpool Sat 6th Aug Sefton ParkSheffield Sun 7th Aug Rother ValleyLeedsSat 13th Aug RoundhayManchester Sun 14th Aug WythenshaweDerbySat 20th Aug Darley ParkCoventry Sun 21st Aug Memorial ParkCardiff Sat 27th Aug Bute ParkMilton Keynes Sun 28th Aug Willen LakeDundee Sat 17th Sep CamperdownAberdeen Sun 18th Sep HazelheadLondon Sun 2nd Oct Victoria ParkEdinburgh Sun 23rd Oct HolyroodGlasgown Sat 29th Oct BellahoustonLittle Hearts Matter now has the followingpublications and packs available free of charge tomembers - to get your copy just call the office on0121 455 8982 or email info@lhm.org.uk or visitwww.lhm.org.uk.• Antenatal Information Pack• Preparation for Hospital Booklet• Preparation for Hospital Pack - to borrowfor a period of 3 weeks.• Benefits - a guide for parents• Feeding at Home - a guide for parents.• Early Years and Infant School EducationBooklet• Junior School Education Booklet• Transition to Secondary School EducationBooklet• Dental Care• Fundraising PackDIARY DATESOn Your Marks For Little HeartsSunday 22nd May 2011Worthing Sea FrontVOn Your Marks For Little HeartsSunday 25th September 2011Shugborough Hall, Staffordshire'LHM Lights of Love' Switch OnSunday 11th December 2011StaffordshireOur Favourite LetterV28To find out more orregister go to:www.bigfunrun.com"Dear Little Hearts Matter. My nameis Grace Cunningham. I have raised £50.I hope that is enough money to help thepoorly heart children. My fundraising was abig Christmas card and a big money box."From Joy Cunningham's big sister, age 8 x