Here's - Little Hearts Matter

TrusteeNewsthe standard of service and expandingthe offerings to members. The tablebelow shows how the majority of thecosts are fixed due to staff costs andoffice costs. These are integral to theorganisation to ensure that membershipsupport is available when required.Finance Updatefrom David Baumber,LHM TreasurerAt the recent Annual General Meeting(part of the Open Day), I gave a briefsummary of the financial position of thecharity. The graph below shows the totalincome and costs from 2006 through to2011.Across the six years our income hasremained constant with the exception of2010. Although the total income hasbeen fairly constant, in the earlier years,the charity was receiving restrictedincome (ie funds which can only be spenton specific projects) whereas the incomein recent years has included moregeneral fund income. General funds canbe used to fund expenditure as deemedappropriate by the office team and trusteesin response to membership requirements.The dip in income in 2010 follows theimpact of the decline in the UK economyas the credit crunch was taking effect.Our costs were below income in theearlier years shown above, but increasedmarkedly in 2009 and 2010. This was adeliberate strategy. Much of the fundingwe received in earlier years could only bespent on specific projects which were stillin the planning phase. The slow utilisationof these restricted funds meant that wehad a relatively high bank balance. As aresult, we were struggling to receivemoney from other funders, who werelooking at the accounts of the charity andchallenging why they should providefurther funding. As such the trusteesdecided to spend these funds. Projectshad already been started before the creditcrunch so when the drop in income came,the charity was exposed and this wasgreatest in 2010.The 2011 position shows a significantimprovement with increases in fundingboth from friends of the charity throughdonations and fundraising, and throughgrants. Our income has increased by£44,000 or 19% from 2010 giving a strongposition to move forwards.During 2011, our costs fell by £28,000or 9% reflecting cost and projectreductions which were started during2010. A key challenge for the charity isreducing the cost base whilst maintainingIncome£'000 2011 2010General Fund 263 232Restricted Funds 20 7Total 283 239Costs£'000 2011 2010Fixed Costs 212 223Variable Costs 59 76Total 271 299Fixed proportion 78% 75%Moving forwards, we have corporatesupport in 2012 from NatWest, where weare charity of the year for several regions,and funds will also be coming from acompany called MSA who manufacturehard hats. This funding is a great start butongoing support is always needed fromfriends of the charity as approximately£300,000 is needed each year to deliverthe services our members need.Copies of the accounts can bedownloaded from our website, or you canrequest a copy from the office. Please donot hesitate to ask any questions youwould like about the accounts; questionscan be addressed to me, and sent viainfo@lhm.org.uk.Here’s an update on what’s beenhappening on the media front overthe past few months:The new Fontan book was launchedtowards the end of last year. This willbe a vital tool for all our families. Thebook wouldn’t have been possiblewithout the kind support of theRobinson family and Charlie Turneragreeing to tell his story. The launchof the book was picked up widely inthe medical media.Our young members continue toact as trailblazers for the charity.Evie Fairman supported an event inthe South West inspiring otheryoung people with heart conditions.This resulted in widespread presscoverage across the region. ThanksEvie! Another young inspiration,Jack Negus, single-handedlyproduced a ‘Stars of Tomorrow’variety show for Little Hearts Matterin February this year. We have justheard that Jack has been awardedwith the BBC Pride of SomersetYouth Award. Well done Jack!Christmas was busy for LittleHearts Matter with the announcementthat Rational FX would give us thesponsorship rights for theBirmingham City FC Boxing Daymatch. This was a fantasticopportunity to raise nationalawareness of Little Hearts Matterand we secured a high profile piecein The Sun newspaper. The playersproudly wore the LHM logo on theirshirts and this was broadcast onSky and across numerous nationalnetworks. Young members PaigeLaight, Matthew Baumber andGeorge Lawrence supported thepress launch and their picturesappeared widely. Thank you tothese young people and theirfamilies for their invaluable support.We are often contacted by themedia concerning issues aroundorgan donation. Recently thisresulted in a piece in Take a BreakMagazine with Paige Laight. We willcontinue to look for awarenessopportunities around this importantissue.As we enter spring Little HeartsMatter is as busy as ever with manyevents planned over the next fewmonths. I look forward to beingtouch with many of you soon.3

FeaturePaul, Nancy and their daughter Isobel Rhodes visited theLHM Open Day for the first time this year. Below is their takeon the day.Written byPaul and Nancy RhodesAs we were watching the children playand run around at the Little Hearts MatterAGM and Open Day recently, my mindjumped back to when we receivedIsobel's diagnosis. At no stage back thencould we have imagined a happy scenelike this. With plenty of teenagers andolder children, as well as the likes of uswith toddler - terrors, and one expectantcouple, it was a busy melting pot ofactivity.This was our first Open Day, and wewere relieved to see a large turnout - asold friends caught up over coffee andendless biscuits and people milledaround the stalls which had a broadsweep from benefits advice to gettingdriving lessons. We were immediatelymade welcome and paired up withanother new family to break the ice.The day began in earnest with SuzieHutchinson's talk about the Fontanoperation - a significant milestone for allfamilies with a single ventricle condition.This set the tone for all that followed -informal but informative, with plenty ofinteraction from the audience. Thesession introduced a new bookletproduced by the team, but the addedvalue here was the chance to talk withnot only the LHM team who put ittogether, but also the trustees and thelugubrious Dr Oliver Stümper from theBirmingham Children's Hospital.It was a good chance to find out more,and a fascinating chance to see whatother parents were thinking.Unsurprisingly perhaps, the panel Q &A after the AGM dwelt mainly on thelong-term treatments and transplantationoptions. Items discussed includedimpeller pumps (which could potentiallyreplace valves, but more sophisticationis required before they could mimic therhythm of a normal heart). All of thediscussion about antibody eradication(which helps transplantation) and BerlinHearts was new to us, and we werereminded again that our children's nonstandard hearts do not fit the medicalmodel of large scale medical testing, sobreakthroughs rely on centres like theFreeman in Newcastle pushing theboundaries. With fewer than 100transplants a year taking place, it wasreassuring that other options are beingexplored, although Dr Stümper wouldn'tbet his house on a cure!Another highlight was hearing HannahPalmer - a leading light of LHM's YouthCouncil - talk about her plans foruniversity. Hannah is fast becoming anaccomplished public speaker and is agreat spokesperson for the charity.For us personally we were delightedwe'd made the effort to travel from York,to learn, meet others in this unlikely club,but more importantly to give somethingChildren's Workshop4As the Cardiac Play Specialist team we were approached by LittleHearts Matter and asked to provide a workshop for childrenand young people attending their annual open day. We weredelighted to accept the invitation.Our brief was to provide information on two subjects whichwere:• What do you want to know about going to hospital?• Medicines and why we take themFor the session we encouraged the older childrento write questions down as we felt that the sessionshould be led by them and their questions andexperiences. Emily (the puppet) and her brotherTommy (the puppet) encouraged the younger

,,back to a charity that has helped us somuch at critical times in the last twoand a half years.A good guide to the lasting value ofan event is not only that you learnsomething, but whether you doanything differently as a result. WithIsobel's Glenn shunt operationscheduled for May this year, we havebeen inspired to check with our centreabout pre-admission visits afterreading the new Fontan guide andtalked our nursery into setting up ahospital play corner. The event hasmade us think seriously about Isobel'sheart again (we've been consciously,,It is always a treat for me to spendtime with the families and the children.Baroness Valerie Howarth (pictured)not thinking about it formonths) so we have writtenout a layman's descriptionof our daughter's conditionso we can manage people'sexpectations for the comingsurgery and take a little pressureoff ourselves.The long-term views given at theevent, and embodied in Hannah andmany others like her, forces us to lookbeyond the operations to come withmore confidence.Our thanks to all the team for all thehard work that clearly went intomaking the day a success.children to ask their questions.The children and young people were all very keen toparticipate in the session. Some familiar patients werealso keen to help answer the questions. The following area few examples of the diversity of the questions asked• What is it like having half a heart? (sibling question)• How many chemicals are in hospital? (patientquestion)• How many chemicals are in medicines? (patientquestion)• How many doctors are in hospital?• Why do I have to take medicine?• When can we eat in hospital?• How long do I stay in hospital?Our responses to the questions were age appropriate,reassuring and honest (both of us needto learn more about medicines for anyfuture chemical questions!). Overall thesession was extremely positive and we felt the childrenand young people gained a lot from it.Thank you for having us.Helen Costello and Debbie Trowbridge5

Personal StoryKerrylee shares her journey with son Kori.Written byKerrylee Stovell6Paul and I lost a baby via ectopicpregnancy in 2010, so when I fellpregnant again, we couldn't believe it!!The first trimester passed withoutproblems, a bit of morning sickness,but nothing out of the ordinary, and my12 week scan at Chesterfield Hospitalin Derbyshire showed everything wasgoing perfectly with the pregnancy sowe decided to allow my 8 year olddaughter (from a previous relationship)to come with us to the 20 week scan,so she could feel involved and learnthe sex of her new sibling.That's when our world fell to pieces.We were told we were having a littleboy, but almost immediately, ourhappiness turned to fear, when wewere told they had detected a problemwith our baby's heart, and after acouple of sonographers and a doctorhad looked at the scan, we were takeninto a room to discuss what they'thought' they had discovered.We were told they suspected aserious heart defect called 'HypoplasticLeft Heart Syndrome' and explainedbasically, our baby had half a heart!!We were sent to Leeds hospital for aspecialist scan, which lasted for about5 minutes, and then me, Paul, and acouple of friends who came with us, allwent into a little tiny room, wherespecialists came in and explained ourbaby definitely had HLHS, and drewpictures of a heart, filled our headswith medical jargon and handed us afolder from a charity called 'LittleHearts Matter' that had a DVD to watchand some information inside.They then proceeded to tell us in nouncertain terms, that they basicallyrecommended I 'interrupt' my pregnancy,telling us our baby had a 50/50 chanceof survival, but might die in utero, duringthe birth or soon afterwards, and if heDID survive then he would need surgerywhich is painful and heartbreaking forus.We all left that hospital in the mindsetthat I was being cruel to keep thepregnancy ongoing...but there was noway I could end our much wantedpregnancy!Paul has a heart condition himself,and at aged 16, underwent open heartsurgery to replace a valve, so for awhile, I think he blamed himself forwhat had happened, thinking geneticshad played a cruel trick on us, but wecan't be sure that's what has caused it,and it's NOT his fault.Paul and I sat down and after initiallyboth crying and wondering 'why us'.Paul seemed (to me) to shut off slightlyto everything, whereas I dived headfirstinto websites, information online,joining heart support groups, andresearching as much as I could. I canhonestly say though, some of thethings I came across online devastatedme, there were horror stories, awfulphotos of little children wired up tomachines, and it scared me so much Islipped into a depression as fear forour baby took over.We were referred to BirminghamChildren's Hospital and the medicalprofessionals however, reassured usto some extent, telling us our baby hadan 80% chance of survival and that thesurgical procedures had come onleaps and bounds in recent years sowe felt there was a glimmer of hopeafter all!!The next few months seemed todrag, whilst we attended appointmentswith specialists, midwives, nurses andhad monthly scans to check our son'sprogress, and eventually....the timearrived for our son to be brought intothe world.I was scheduled to be induced atBirmingham Women's Hospital onAugust 22nd 2011, and so Paul and Ipacked our cases, plus a few little babybits (not knowing whether our babywould ever wear the babygrows wewere packing, or see the little blueteddy bear we took for him). I wasinduced that day and after a problemfree labour, (with a much appreciatedepidural), Kori Harley Parkin-Stovellwas born, 2 days later, weighing animpressive 7lb 7oz!!He was delivered onto my chest,then quickly taken to waiting specialistswho checked him over and then didsomething we weren't expecting....theywrapped him in warm blankets and puthim into my arms!!!! He was perfectlooking!! Both Paul and my friendDonna also got a cuddle with him,before they took him away to thePaediatric Intensive Care Unit (PICU).Once I had been checked over(roughly an hour later), we were takento see Kori, who was breathing byhimself, but was attached to a dripgiving him a lifesaving drug to keep thehole in his heart open that unbornbabies have. He stayed stable, up untilthe early hours of the next morning,where he was ventilated, and thentransferred in a high tech Mclaren 'pod'to Birmingham Children's Hospital intothe Intensive Care Unit.We travelled separately to Kori,which upset me, as I was terrified ofhim being taken from my side in case

,,Without the ongoingsupport from the LittleHearts Matter team andthe many wonderfulpeople we have met inhospital and online, wewouldn't have managedto come to terms withour son's illness.,,anything happened and I wasn't withhim, but the staff took VERY good careof him, and as soon as we arrived, acardiac liaison nurse met us and Kori'sSurgeon Mr Barron met us, and talkedus through the whole procedure,promising to treat Kori as if he was hisown child.Kori had the 1st stage of the 'Norwood'procedure at just 2 days old, and was outof surgery in about 3 and a half hours,instead of the predicted 6/7 hours!!When we first saw Kori, I burst intotears, we had seen other babieshooked up to machines, but I didn'tthink anything could have reallyprepared us for seeing our own baby inthat situation, and it devastated us.He was cared for SO well though onthe ICU by some of the NICEST peoplewe have ever met, and although it washard seeing our tiny son attached to somany machines, we knew it was savinghis life, so we somehow saw past themedical equipment and focused onKori.We were able to stay in the Parents'Accommodation which was locatedright above the ICU in the hospital, sowe were able to see Kori whenever weliked...I even used to go and sit with himin the early hours of the morning...andnobody minded, they even made sure Ihad a big comfortable armchair to rest in!!I felt SO helpless, but decided the onething I COULD do for my tiny son, wasto provide him with my breast milk, so anurse and breast feeding specialisttaught me how to express my milk forKori, and to be honest, this became myfocus, and gave me a purpose, insteadof sitting feeling like a failure as a mum.I hired a breast pump machine from thehospital, and would sit in our roomexpressing milk, and then Paul wouldtake it to the milk storage unit for it to bepasteurised, and it made us both feelgood, to do something positive for Kori.I remember our first cuddle with him,at just 4 days old, we had to sit in a bigchair whilst 4 nurses carefullymanoeuvred Kori and all of his pipesand wires onto my knee, taping wires tothe chair to ensure they didn't slip, and Ijust remember staring at this little tinyboy, and wanting to collapse in tears,but I stayed strong and just stroked hisface.Kori spent about 2 weeks in ICU thenwas moved to the High DependencyUnit on ward 11, where he wasmonitored for a few days, then movedinto the main ward, where he stayed fora week, until they told us, Kori wasmedically doing really well, so theywere transferring him closer to home toDerby Children's Hospital, so he couldlearn to feed, as he was being fed viaNG tube. We travelled with Kori and anurse to Derby, where we were againgiven accommodation to be close toKori. We had no idea how long wewould be there for, and we were taughthow to draw up his medicines, how totest the PH in his stomach via his NGtube and how to feed him. We had to be'signed off' on everything, several timesbefore we were given contact with the'kite team' who would be our help whenwe took Kori home.We both asked to be trained in 'babyCPR' just in case anything happened,and I think that empowered us in someway, instead of just being afraid that inthe event of an emergency we wouldnot know what to do.The day came when the nurse walkedinto Kori's hospital room and told us wecould take him home, I was excited butPaul was concerned that we weren'tready, but we packed all our things, andtook our little boy home!!As soon as we walked in our houseand shut the front door, I think theexperience of what we had beenthrough hit us really hard and I cried in7

Personal Story cont...8Paul's arms. All of a sudden, we wereresponsible for this tiny little baby, whowas seriously ill...we had to measureand administer his life savingmedicines...what if we got the dosewrong and we killed him????? I had toagree with Paul that I didn't think wewere ready to be on our own, afterhaving the security of the nursing staffon hand 24/7. However, we had NOchoice and it took us a good week toget our heads around the fact WE wereKori's mummy and daddy and WE HADto cope and deal with it.My daughter Ebony came home aftera day of us getting home, so trying tojuggle her and Kori was stressful andscary, but Paul took her to school everyday to give me chance to feed Kori.After a couple of weeks, we took Koriback to Birmingham Children's Hospitaland Kori's heart was scanned, andeverything was going well, and his NGtube was removed as he was feedingfrom a bottle and taking his meds orally!A few days later, I tried breastfeedingproperly and he latched onimmediately!!!! From then on, herefused all bottles, and fed exclusivelyfrom my breast!We are now 3 months down the line,and we are in a fantastic routine withKori, he doesn't sleep well at night, so Istay up with him, feeding and changinghis nappy, whilst Paul and Ebbie sleep,and then when Kori sleeps, I sleep toowhilst Paul takes Ebbie to school anddoes the housework, before going towork himself.Kori has exceeded everyonesexpectations too!! He is quite pink,VERY vocal, and is now cooing at us,and he is SO happy! He has the mostgorgeous smile, and is very active,always wriggling about and you wouldNEVER know anything was wrong,unless you saw his scar (which is veryneat and faint).He sometimes get's what we call a'smurf beard', where below his mouthwill tinge blue, or the ends of his fingersand toes will be a 'dusky' colour, but wejust check his sats on the machine wewere given to takehome, and usually it'sall fine! I won't say wenever panic, becauseevery sniffle he gets Ipanic and often ringthe hospital for advice,or go online to LittleHearts Matter and askfor advice and help,but that's the BESTthing to do for peaceof mind!!Kori is doing so well,that he is due to havehis first CardiacCatheter done in thenext 2 weeks atBirmingham Children'sHospital, and we ARE scared andworried, but we know he is going to bein the BEST of hands. So many fearsbubble to the surface and at the moment,I do all of Kori's medications and care,but that's because I'm a clingy mum, andI'm a bit scared and in the mindset thatno-one can care for him like mummy!!LOL!We are nervous, yet optimistic aboutthe future, looking forward to our firstChristmas as a family, and many moreto come with any luck, and we oweKori's life to the FANTASTIC medicalstaff and surgeons at BirminghamChildren's Hospital.Without the ongoing support from theLittle Hearts Matter team and the manywonderful people we have met inhospital and online, we wouldn't havemanaged to come to terms with ourson's illness.We want our story to be heard, toprove that even in the darkest of times,there IS hope out there. We have aBEAUTIFUL baby boy to prove it.STOP PRESS...Kori has now had his 2nd stageNorwood and his doing so well. He'sreally pink and actually gets rosycheeks, has SO much more energy andis loving weaning too!.

FeatureIn this edition we highlight some useful tips before and duringa visit to your local Accident and Emergency.Lots of children have at least one tripto Accident and Emergency at somepoint in their lives, most commonlybecause of a broken bone, musclestrain or cut. Children with a congenitalheart condition are not excluded fromthis common childhood trip but it isimportant to think about a few thingsbefore the trip is ever needed.Do they need A&E for a cardiacrelated problem?Sometimes a child with a complexheart problem will need to go to A&Efor swift cardiac treatment. They mayhave become excessively breathless,blue, floppy and unresponsive andneed treatment quickly. Your cardiacunit may not be local so it is safer to goto your local A&E where they will starttreatment, take advice from yourcardiac unit and then plan to transferyour child by ambulance to the regionalcardiology centre.It is always best to call an ambulancefor a child who needs swift treatment.The paramedics will bring treatment toyour door, school or street and be ableto use a blue light to get them to thehospital quickly. If you drive themyourself you may get stuck in traffic. Itis also difficult to support or assesstheir condition if you are driving.It can be very useful for parents andother members of the family to haveundergone basic first aid training sothat they can offer initial care until theparamedics arrive.Do they need A&E because of aninjury?Children have a habit of getting knocks,bumps and sometimes broken bones.This is normal for any growing childespecially if they are at school.However any serious injury will mean atrip to A&E especially if the child isreceiving anticoagulation like Warfarin(a medication given to slow down theblood's ability to clot). If you suspect ahead injury or if you can see a majorWritten bySuzie Hutchinsoncut then it is always safer to get anambulance to take a child to the localhospital.Teachers should have a written planfor what to do if an injury occurs whena child is in school. If they are in doubtabout how serious the injury is it isalways better to take a trip to A&E.What will the doctors in A&E needto know?Although the reason for a trip to A&Emight be for something relatively minor,the doctors and nurses will need toknow about your child's heart conditionas well as any other medical conditions.They will also need to have a completelist of current medication and the mostPoints to rememberHA & Erecent treatments or hospital stays. Itis useful to know what the most recentoxygen saturations and heart rate are.Remember that nurses and doctors ingeneral A&E are used to seeingchildren with saturations in the high90s so they will need to understandtwhat is normal for your child. If youhave a set of hand held records foryour child, it is useful to take them ifyou go to the hospital. If you are notwith your child when they are taken toA&E a Medic Alert bracelet can be veryhelpful for the doctor as it will containcontact details and up-to-date medicalinformation.1. Keep your mobile phone charged so that you can call for assistance inan emergency.2. When you arrive at A&E remember to tell the reception staff about yourchild's heart condition, this should reduce any wait for medical treatment(if the child has arrived in an ambulance the paramedics will tell thedoctors about their heart).3. Always carry details of your child's cardiologist's name and number.4. Always carry details of your child's heart condition, related cardiac rhythmproblems and current medication. It can be really stressful waiting in A&Eand sometimes information disappears from your mind so have a smallcard with everything written down in either your purse or wallet.5. Remember the last oxygen saturation rate and heart rate so that youcan give them to the doctor.6. If you have a set of hand held records for your child take them with youto the hospital.7. Don't try and drive a very sick child to hospital yourself, call for trainedparamedics.8. Make sure that the school has a copy of all your child's medical details sothat they can take them to the hospital if they become seriously sickwhilst at school. Don't ask them to wait for you to go to the school first as itwill delay treatment. Meet them at the A&E department if necessary.9. Think about getting a Medic Alert bracelet or necklace for your child.10. Think about getting basic first aid training from either your local RedCross or St John's Ambulance team.9

FundraisingA warm welcome tothe fundraising pageswhere we havefeatured some of theamazing fundraisingthat has taken placeover the last fewmonths, all in aid ofLHM. We are incrediblygrateful for all yourcontinued support andto the new fundraisersamongst you, thank youfor fundraising for us.We have a list of proven fundraisingideas and lots of tips and information tomake sure your event is a huge success,so please do get in touch or downloadthe information from our website.We also want to introduce some easyways that people can get involved but nothave to organise an event or ask friendsto sponsor them. We love the WaitroseCommunity Matters scheme and havealready received £3,000 from the schemesince it started, so please take a minuteto read it and if you don’t live local to astore, ask a friend or relative who does.Thank you.Please also don’tforget your company,many many employersare now undertakingChosen Charities of theyear or having on packpromotions, where for aperiod of time, a charityreceives a donation foreach unit sold, rangingfrom 5p on a box ofcornflakes to 1/2p perATM transaction. It isvery successful for bothparties as it is likely to generate mediacoverage and increased sales for thecompany and obviously much neededfunds for us to continue the work we do.For more information, please downloadour 'Why Companies Should Support Us'leaflet on our website.And finally, thank you to those whohave returned their Regular Givingdonation. This way of giving helps thecharity plan longer term the supportservices we can provide, and remember... it’s not too late to send the completedform back to us! THANK YOU and havea lovely few months.Best wishes to youall .. Shelagh£300,000£295,000£250,000£200,000£150,000£100,000£50,000£32,000NatWest choose LHM astheir chosen charity10We are absolutely delighted to tell you that 80 NatWestbranches in the Midlands have signed up to supporting LittleHearts Matter during 2012.Staff have agreed to undertake a variety of fundraisingevents throughout the year including Bikeathons, LittleHearty Matter Charity Fundraising Days collections, theBig Hearted Bake and Gala Balls.NatWest have also agreed to match £ for £ every pennythat the staff and customers raise. We hope to raise£100,000 from all the events, which will enable LittleHearts Matter to provide key services to our membersnow and in the future.If you live in Birmingham, Worcestershire, North &South Warwickshire, Coventry, Walsall, Sutton Coldfield,Solihull or East Staffordshire, please pop into your localbranch and thank the Manager and staff and introduceyourself / your children.They would also welcome help at fundraising activitiesso please please do let us know if you can give up a littletime to go along and support any events they are holding.Thank you.

Fundraising IdeasWaitroseCommunityMattersEvery month every Waitrose branch donates £1,000 (£500 inConvenience shops) between three local good causes thatyou choose. And this is where we need your help. Pleasewill you pop into your local store and ask for an applicationform and fill it in. It is very simple (but you can always justcall us and we can run through it with you). Three charitiesare then chosen every month and customers are asked toplace a green token in a box of the good cause they wouldmost like to support. The more tokens a cause gets, thebigger the donation they receive. There are over 180 storesin the UK. If everyone got involved and we won just half ofthem, it wouldn’t be impossible for us to get £100,000 for thecharity, this would certainly enable us to provide some muchneeded new services for our five to ten year olds and ourYouth members.The BigHearted BakeOn YourMarks forLittle HeartsIt’s that time of year, when the running shoes are dustedoff and the training for your annual Little Hearts Matter runbegins.. and this year we are delighted to be able to hold itin sunny Worthing. We hope the sea air and warm breezewill entice as many people as possible to come and join uson the 13th May, whether that is to win the 10K or 5K run,or have a family day walking the 5K with your loved ones.We hope to see many of our families just coming to catch upwith one another. Please see the leaflet enclosed for furtherinformation and a registration form.Please dust off your spoon and makethe 2012 Big Hearted Bake the biggestwe have ever run. Last year we raised£10,133 and our target this year is£15,000. It is a lovely event to hold atwork, school or with family and friends.No matter how big or small you intendyour event to be, please be a part of it. A fundraisingpack has been included. Please pledge your support andsign up to be a Big Hearted Bake on Facebook and keep usupdated and don't forget to send us your pictures afterwards.In Brief...Thanks to Vivienne McQuade who continuesto secure slots where collection tubs can bedisplayed, We were delighted to receive thelatest donation of £111 from McDonalds inGlasgow.Please let us know if shops, banks and placeswith large footfall would like to display a LHMcollection tub .. THANK YOU.Diving with sharks?!!! A bit mad but we're verygrateful to Louise Gault & Jane Fitzpatrick fordoing it as they raised a fantastic £250 in memoryof their nephew Cameron Lindsay.Thank you so soooo much to Mena Loia whonominated us to receive a share of the MothercareGroup Foundation's annual Chairman's Fund.We received a whopping £1,000. Thank you foryour nomination and thank you Mothercare forbeing so charitable.An extra thanks to Great Leighs Primaryschool for raising £453 in memory of MollyLloyd by holding collections at their Christmasperformances.We'd just like to say a HUGE thanks to PamWilliams in Dorking for the many table topsales she has held to raise money for us overa number of years now. She has helped to raiseover £3,000 and we really appreciate all her hardwork.Big thanks to Janet & Michael Watson for holdinga New Years Party in their village and raising£160 Great idea and fantastic support from allthe villagers in Stoke Lacy.North Downs Primary School in Betchworth,Surrey, thank you so much for choosing todonate the money from your carol service to us,raising a fabulous £171.04.Weston Village Primary School, Crewe, Cheshire- thank you so much for raising £424.83 for LHM.Well done to Tibberton Primary School inShropshire for raising a brilliant £217.55 withtheir Big Hearted Christmas Bake sale.Players from Wiggin Golf Society raised afantastic £200 from fines for lost balls andplaying shots into bunkers. Thank you to EricRookledge and all from the Society.Thank you to Fiona Knight, her colleagues andthe many many others who kindly sent us adonation instead of sending cards at Christmas,your donations will go directly to help the familieswe support.Lindsey Hooks has kindly organised another BigHearted Bake at work and raised an amazing£826 with Barclays £ for £ matching.A whopping £825 was raised by Epsom Collegein Surrey from their Christmas service. Thankyou to Graeme Lodge for putting us forward asthe charity to benefit.11

Volunteer NewsVolunteering to help is a very special gift to a charity.No not for profit organisation wouldsurvive if they did not have willinghelpers happy to give a few hours eachweek to help out. Here at Little HeartsMatter we have a variety of volunteersall offering us different skills, listeningon the phone, raising much neededfunds or helping with general officework. They come from all walks of life,grandparents who have retired,parents who want to help other parentsand students from the local university.For this volunteering update wewould like to concentrate on the manyvolunteers who offer their timesupporting other families. There are:-The support linesEvery night and at weekends we havea team of parents who man the LHMsupport line. They are there until 10.30every evening willing to talk to anyonewho calls needing support.Specialist parent-to-parent informationteamWe have a team of specially trainedvolunteers who offer support at thetime of diagnosis especially antenatally,parents who offer their personalexperience to help families negotiatethe school or DLA process and familieswho offer support to parents who havelost a child.Network support leadersIn almost every area of the country wehave parents who try and link familiestogether and offer more local support.The information teamThis is a group of parents who workwith the LHM team to write and edit theLHM information ensuring that it isuseful for our members.We needyour helpThis year we are on a volunteerrecruitment drive. The firstinitiative is to build and strengthenour parent support team.We are looking for a series of newmember volunteers who can helpwith our parent-to-parent workeither on the telephone or in theirlocal region.Volunteers' strengths must includean ability to listen and to supportpeople who are distressed withoutbecoming distressed themselves.They must be able to offer a setnumber of volunteering hourseach week, be a good organiser,and be friendly and approachable.12Network LeadersSupport LinesParent Information teamion teamWould you like to exploreSupport Volunteering somemore?Just give us a ring and we willsend you information about thedifferent roles available. All ourvolunteers go through training sothat they have skills that helpthem cope with the job. Duringthe training weekend you willhave an opportunity to explore ifthis is the volunteering job for you.We plan to hold a trainingweekend in Birmingham on the23rd / 24th June 2012. LHM willpay travel and accommodationcosts.Remember that there are lots ofother volunteer jobs available withLHM - fundraising, awarenessand general office support so iftalking to families is not for you,just give us a ring to find out aboutother roles.

My Story...Jack Negus, is aged 18 years old and was born withHypoplastic Left Heart Syndrome, below he shares his story.My name is Jack Negus. I was born onMonday 29th November 1993. The timewas 11am and I have a life threateningheart condition called, Hypoplastic LeftHeart Syndrome. I was diagnosed atMusgrove Park Hospital in Taunton, thecounty town of Somerset.I live in Ashcott with my Mum, Suzi,Dad, John, Sister, Sophii, Brother, Harryand a ten year old collie-retriever crossbreed, whose name is Amber.My Primary and Secondary schoolyears were tough. In Primary, I wasalways in and out of hospital and inSecondary, it just seemed the coughs,colds and bugs wouldn’t go away. Onceagain, this led to me missing a substantialpart of my education. Nevertheless, Iploughed on and came out with 11GCSEs, 10 of which were A* - C grades.During my time at Crispin SecondarySchool, it occurred to me that there wasno publication or newsletter thatappealed to 12-16 year olds. So in mysecond year at the school, I produce anenjoyment publication for the pupils toread. It came out quarterly and continuedfor 3 years. Although this was benefitingthe school, my headmaster refused tohelp with funding, so annually I had tofind £3,200 to cover the cost of printingthe 1,200 copies needed. It was a hugesuccess with my fellow pupils, who tookpart in mini fashion photo shoots, writingarticles and more. Meanwhile, I trolledup and down the high street calling intobusinesses who would place advertswhich would cover the cost.Leaving day at Crispin came in a flash.One chapter closed and another oneopened. I didn’t want nor felt like going tocollege, as most of my friends havedone. Instead I took another big risk. Forthe first time in my life, when I was onlysixteen years old, I opened up a smallretail shop called ‘The Slipper Box’. Itwas 12ft by 10ft and had a small toiletcubicle which was just about useable!The shop specialises in luxuryWritten byJack Negussheepskin slippers and gifts. I wantedthe shop to feel different, so a Farrowand Ball green was chosen for theexterior, in combination with a burgundyfor our logo. Inside are several classicwooden stands, a ‘Valet’ wardrobe and asort of, ‘Are you being served' counter.The Slipper Box is now run as onlineand mobile business. The brands I stockinclude Draper of Glastonbury, MorlandsSheepskin, Wessex Footwear andCosyfeet. I visit care homes all overSomerset because I felt that a lot of theolder generation couldn’t or didn’t wantto go out shopping. So bringing aselection of my products to the home forthem to try on is ideal. I normally get acup of tea and a biscuit, whilst theydecide which colour! They also love thefact that some of the profits I make go toLittle Hearts Matter.I don’t play rugby or football and neverhave been a sporty person. Instead I liketo organise talent and music events. I’veproduced events in many venues acrossmy county including the famous Clark'sVillage shopping centre. Recently Iorganised a full on theatre talent show:300 seats, lots of talented youngperformers and one very posh bar area!BBC TV presenter, Alex Lovell comperedthe evening, with my good friend, RyanLinham. Suzie Hutchinson also travelleddown to watch. It was a wonderfulevening raising over £3,000 for LittleHearts Matter. If you’d like to have a lookat the photos visit my website.I’m now eighteen and am reallyenjoying my life. I was voted Winner andYouth Pride of Somerset 2012, this wasfor my fundraising and health battles.Although some of the decisions thatI’ve made in my life have been risky,most of them have been successful.This is due to the support of my family.My parents and siblings have been sosupportive throughout my life and all Ican say is, thank you.Life is what we make it. It’s our owndecision to choose what and who wewant to be. Life is tough and for peoplelike myself, it's a little tougher. Yet Ichoose that my condition won’t get in theway of what I want to do....www.jacknegus.comwww.theslipperbox.comJack with Emma Brittonfrom BBC Radio Somersetat the Pride of SomersetYouth AwardsJack with Festival Founder,Michael Eavis13

Personal Story"Hello. My name is Sue Licence and I have been followingLittle Hearts Matter for a long time. I have finally writtenJade's story. I would love to share it with you."Written bySue Licence14It all started on the 25th May 1995,Jade was 9 days late but she was hereand she was beautiful. After a goodlabour and birth we took Jade home tobegin our life as a family of 4. Jadewas always a funny blue colour but themidwife said that was because shewas born quickly and it should go aftera few days. So when the doctor cameround when she was 5 days old I hadno concerns, he checked her all overand then he listened to her heart. Thisis the start of our journey......The doctor said that she wastachycardic, she had a slight heartmurmur and that she sounded like shehad a heart defect, probably just ahole, but he told us not to worry and totake her to our local hospital in themorning for some tests. I phoned Mattand he came home from work to helpme sort out things for the next day, wearranged for Matt’s mum to have Aaron(Jade’s older brother) and gave Jade anice bath, which she didn’t like. Shewent bluer in colour and was squeakinglike a mouse but we just thought thatshe didn’t like the bath.We arrived at Southend Hospital thenext day where doctors started to dolots of tests on Jade. Over the next fewhours Jade’s condition got worse, theycouldn’t get a blood pressure reading,found it hard to get bloods and shedidn’t want any milk or water. Thingswere not looking good for Jade. Thedoctors told us that they were going totransfer her to the Royal BromptonHospital in London but they couldn’tsee her until the morning so they madethe decision to send Jade to GreatOrmond Street instead. The next fewhours were a blur, us not really knowingwhat was going on, Jade getting moreand more distressed and the doctorsand nurses running all over the place,then at last we were on our way.Jade was blue lighted up to GOSHand arrived just before 6pm where thedoctors tried to find out what was wrong.By 8pm we knew, Jade had HypoplasticLeft Heart Syndrome, Jade’s life hungin the balance.They said if she survivedthe night that they would operate on herthe day after, the next 36 hours wascrucial.Jade was 8 days old when she wentfor her first surgery, stage one Norwoodprocedure and after 12 hours in theatreshe came back to ITU with her chestopen but at least she had made it.Over the next few days the doctorsstarted to reduce some of themedication and things were looking upbut then Jade had a setback whenthey closed her chest. At 18 days oldshe went back into theatre to have aleft BT Shunt. We were back on thewaiting game to see if she would beok. Again she pulled through andthings started to look a lot brighter.After 3 weeks on ITU Jade was movedto the high dependency ward, she stillwasn’t feeding properly so she wasgetting her feeds through an NG tubebut soon she started to get strongerand started to put on some weight.Things were finally looking up for Jade.After 6 weeks at GOSH we finally tookJade home. We knew that she wouldneed further surgery but that wasn’tgoing to be for a while, so we planned toenjoy ourselves and took Jade to Clactonto meet the family and I started to goback to the mother and toddler groupthat I went to before all this began. Forthe next 9 weeks everything seemed sonormal, apart from the NG feeds,vomiting and lack of sleep, Jade washome and we were a family.September 23rd was the start ofJade's next journey, one of survival.Jade’s paediatric nurse came out tocheck on Jade and noticed that shehad gained a lot of weight, again I waspleased, but I should have beenworried. We went back to our localhospital where after a scan, it showedthat Jade's heart had started to go intoheart failure. All the weight that Jadehad put on was fluid and it was puttingtoo much pressure on her heart. Soback to GOSH for the cardiac team tohave a look. Our fears were confirmed,Jade had gone into severe heartfailure. Over the next 24 hours theytried to get the fluids down, to see ifthat helped but it didn’t so on the 24thSeptember the doctors came roundwith the transplant team and said thatJade’s only hope was a transplant.She was 4 months old.Great Ormond Street was going tobe our home, Jade was placed on theactive list and the wait began. In themonths to follow Jade had a Hickmanline put in, we spent her first Christmasand New Year on the ward, then inJanuary Jade had a respiratory arrestand was put on a vent for a week. Sheovercame that but still desperatelyneeded a heart. Jade was constantlyblue and her sats were, on a good day,up to 75 but mainly they were in the60’s. By now her other organs werestarting to weaken. We didn’t want togive up but Jade was now so poorly wedidn’t even know if she would survive atransplant.On February 24th 1996 we had justcome back from watching the Lotteryand the transplant team came and toldus they had the news that we had beenhoping for, the last five months, Jadewas going to get her new heart. Mixed

,,,,Jade is now 16years old andvery happy.emotions came over us, joy for Jadewho was to be given her second chancebut also sadness at another family’sloss of their loved one. How could weever thank them enough?Jade went down to theatre just beforemidnight and she came back to us atjust after 9am the following day. 25thFebruary 1995 was the start of Jade’snew life. The first thing that we noticedwas that she was a lovely pink colourand her lips were so bright. Over thenext 48 hours they turned down thevent to wean Jade off and get herbreathing for herself, which worked, shewas starting to laugh, smile and kickher legs about, as she didn’t moveabout that much before, it was amazingto watch her improve. The day came forthe doctors to remove the vent and seehow Jade would cope; she didn’t so itwent back on. They tried another coupleof times over the next 2 weeks but still noluck. Jade was taken back to theatre fora bronchoscopy, to check for anydamage to her airways. The news wasn’tgood, Jade had vocal cord palsy. Theonly chance for her to come off the ventwas to have a tracheotomy put in herneck. So a month after her successfultransplant Jade was back in theatre.Over the next 2 months Jade wasweaned down to just having a smallamount of oxygen via her trachy and wecould start to think about going home.Or so we thought. After spendingJade's first birthday still at GOSH andJade still not eating and continuallybeing sick we then discovered that Jadehad a hiatus hernia, she needed herdiaphragm sorted out and she had aNissen operation, where they put in agastrostomy tube into her belly to helpher feed. Heart-wise she was perfectbut it seems that the wait for her hearthad put so much pressure on her otherorgans they needed more time to heal.When Jade was 14 months old wefinally got home, 5 months aftertransplant and 10 months after goinginto heart failure. She still had the trachyand her gastrostomy but she was happyand that was all that mattered. Jadecontinued to grow, slowly and as hermedicines started to reduce thingsstarted to get a bit easier.Over the next 3 years Jade continuedto do well, Matt and I had another baby,Becky, perfect in every way and wediscovered that Jade had some learningdifficulties but at this stage we were notsure to what level. We started to learn afew simple signs and Jade was gettingstronger and was able to stand on herown now. We were coping with hertrachy and gastrostomy on a day to daybasis and living life as normally aspossible, then in January 2000 Jadedeveloped Haemolytic Anaemia, a bigsetback as this could have cost Jade herspleen or even her life. After a short stayat GOSH, blood and some very highdoses of steroids we went home again.Then in March of that year Jade had abronchoscopy to see how her vocalcords were doing. After yet anotherminor setback and 6 months later,success, the trachy was out after 4years, now we just had to get rid of thegastrostomy.Jade started school just before her5th birthday, where she continued tothrive and do well. Her speech wascoming on very slowly and her mobilitywas improving and heart-wise yet againno problems. Then by her 7th birthdayJade was walking and eating and evensaying a few more words. Thegastrostomy was out and with fewertrips to the hospital we were finallybeginning to feel like a family.Jade is now 16 years old and veryhappy, she still has learning problemsand her speech is limited but she is here15 and a half years post heart transplant.From going from having only a few daysleft to live and then maybe only havingan extra 5 years after transplant Jadehas proved everybody wrong. We knowthat time is not on our side but we aregoing to enjoy every minute of it. Don’tever give up the fight.Donor cardsRemember that children with heartconditions may need a hearttransplant. If you would like to help,carrying a Donor card or registeringyour name on the Donor Register atwww.uktransplant.org.uk couldn’tbe simpler and it could help savesomeone’s life.15

Zipper ZoneThis year at the LHM Open Day over 25 young people cametogether to talk about bullying and how it impacts on people'slives. Below is a summary of the session.Written byJon Brunskill16As recently as a decade or so ago,bullying used to be an accepted part ofschool life. At high school, bullying wasalmost considered a rite of passage; apreparation for the big bad world. Ifyou were called names, teased oreven pushed around, parents mightoffer useful ‘advice’, like “Just ignorethem” or, even more dangerously, “Youneed to hit them back!”Thankfully, we have moved on fromthis attitude towards bullying. Thisyear, at Little Hearts Matter’s OpenDay, over 25 young people cametogether to talk about bullying and howit impacts people’s lives. We discussedhow bullies often target people thatthey think are ‘different’, and howhaving a heart condition can besomething that bullies target.ChildLine came to talk to the youngpeople, and set each of our groups avery simple task. Draw an averageperson. You can try this yourself. Startwith the simple stuff like height andweight, and then fill in the details: haircolour, eye colour, skin colour, the kindof clothes they wear. Then go a littledeeper and think about the personalityof an ‘average’ person. What are theirhobbies, their hopes, ambitions, fears?You will, like the young people at theOpen Day, probably start to find thissimple task very tricky. This is, ofcourse, because we are all verydifferent. For young people with a heartcondition, who often worry about tellingother people because it will make themfeel different, this was a very usefuldiscovery. First of all, they realised thathaving a heart condition doesn’t definethem. It’s just one small part of all ofthe little things that make them theperson that they are. In fact, lots ofadults (and some young people), withheart conditions wear their chest scaras a badge of pride, because it showshow strong they have been to comethrough their surgery.Lots of the young people also madean excellent point on the day. Ifsomeone wants to bully other peopleat school, they will find something,anything that they think makes thatperson different. Picking on a heartcondition may be an easy targetbecause not many young people haveheart conditions, but, as one of our 11year olds said “If I didn’t have a heartcondition they would just pick outsomething else about me. So it’s notreally got anything to do with my heartcondition.”This doesn’t meanto say that beingbullied doesn’t makeyoung people feelvery insecure. In fact,when working ingroups to discusshow a young personbeing bullied feels,the word insecurepopped up lots oftimes. They also feltsad, powerless,upset, angry, lonely,depressed and hurt.Nobody should have to feel like that.Everyone has the right to feel safe andhappy at school (this doesn’t meanthat you don’t have to do yourhomework if it makes you unhappy…)There are lots of positive things thatyou can do to get bullying stopped.The first is to understand that itshouldn’t be happening, and it isdefinitely not your child's fault. Schools,by law, have to take bullying veryseriously, and every school has tohave an anti-bullying policy. Thismeans that if they find out someone isbeing bullied they have to make surethat it is stopped immediately, anddoesn’t start again.The second thing that your childneeds to do is tell someone. Thisbrings about a lot of feelings as well.The young people at the Open Daytold us that young people could feelscared (because they might not betaken seriously). They might also feellike a grass or a snitch. This is a cleverway that bullies make sure they areable to continue making people feelmiserable without getting caught or

,,If I didn’t have a heart condition they wouldjust pick out something else about me. So it’snot really got anything to do with my heartcondition.,,stopped. Remember that nobody hasthe right to make anyone feel scared,anxious, lonely or sad. If someone ismaking a person feel this way thenthey don’t deserve to be protected. Ittakes a lot of courage to tell someone,which is why it’s such a brave thing todo, and takes a strong person.Remember that bullying doesn’t just goaway if it’s ignored, and it can even getworse.Who should they tell? Somebodythat they trust, and preferably an adult.Often, the best people to talk to is youthe parents, as you will be able tosupport them, and also talk to schoolto make sure they take action straightaway to get the bullying stopped. Theycould also talk to a friend or even atrusted teacher. Although it is scary atthe time, try to keep in mind that in theend it will lead to the bullying gettingstopped, which means they won’t haveall of those horrible feelings associatedwith bullying.If talking to someone that they knowis a bit too much for them to do, theycan always call ChildLine. They will beable to talk to a counsellor about howthey are feeling, and get advice onwhat can be done about it. They don’thave to give their name, and they cantake control to decide when they wouldlike to take action against the bullying.Calling ChildLine is confidential, whichmeans that they won’t pass on anythingthat is said unless they are asked orunless they think that it is an emergencyand someone’s life is in danger.Your child can also get in touch withLHM by getting in touch with Jon orSuzie. They can ask anonymousquestions through the website, or sendan email to jon@lhm.org.uk or suzie@lhm.org.ukJon and Suzie are bothtrained counsellors, andhave lots of experiencetalking to young peoplewho are being bullied.Although Little HeartsMatter’s confidentialitypolicy isn’t as strong asChildline’s, we won’tpass on anything thatthey tell us unless wethink that it is a ChildProtection issue, whichmeans that a child is atrisk of harm.To recap, here is a list of things that your child can Try To Doand Try Not To Do if they think that they are being bullied:Try not to:OOOOTry to:PPPPPFight back. You could end up getting in trouble, and yourteachers might think that it is just a fight, and be less likely tobelieve that you are being bullied. Also, getting into fights isvery dangerous if you are on medicines like Aspirin or Warfarin.‘Just ignore it’. It probably won’t go away, and could get worse.Bottle up how you’re feeling. There are people that you can talkto; confidentially if you’d prefer.Think that the bullying is your fault, or because of your heartcondition. It’s not your fault.Talk to someone about what is happening and how it’s makingyou feel.Avoid contact with the bullies if possible.Ask your mates to look out for you.Keep a diary of what is happening, and how it makes you feel.Contact Childline or LHM if you want to talk to someone.Tell your parents or teacher and make sure that it gets stoppedfor good.17

FundraisingCharity Bollywoodand Bhangra Nightraises a staggering £15,000for LHM.Below is just a snapshot of some of the amazing fundraisingyou have undertaken, and this is how we exist and continueto provide the services we do.A most sincere and grateful thank you to everyone, includingthe people we have been unable to highlight on these pages- THANK YOU.18What a wonderful evening ofcolourful dancing, exotic food, warmwelcomes and an opportunity toraise greater awareness of the workof Little Hearts Matter. 400 peoplepacked into the Banqueting Suite inHarrow to raise money for LHM andto introduce a new audience fromthe Indian Asian community to theneeds of children diagnosed withsingle ventricle heart conditionsand the work we do.Neeta and Sundeep Saggar arepassionate supporters of the workof the charity having found LHMbefore their baby was born. Theyhave looked to LHM for support andinformation that helps them gain agreater understanding of their baby’sheart condition and the lifestylerestrictions that his heart conditionwill create. Having received helpfrom the charity themselves theydesperately wanted to raise fundsthat will allow the charity to continueto offer families help when they areat their most desperate but theyalso wanted to raise a greaterawareness about what congenitalheart disease is and let peopleknow that LHM could be there tosupport them.Suzie, our Chief Exec attended theevent and said “A huge thank yougoes to Neeta, Sundeep and theirfriend and family for a wonderfulevening, They even taught me thebasics of Asian dancing.”Bobbies backingbaby ZacLast year we told you about the PethickFamily who were expecting their littleboy in May who had been diagnosedwith HLHS and the £6,000 the family,friends and colleagues had raised forLittle Hearts Matter. We are delightedto say that Zach is now out of hospitaland at home with his family, he ispictured as the guest of honour at acheque presentation at Taunton PoliceStation in December, where AndyMurphy, officers and staff at TauntonPolice station have raised a staggeringSuzie, our Chief Exec attended the‘The Stars of Tomorrow’ event andsaid. “Eighteen years ago I had thepleasure of being introduced to a veryspecial young boy and I was honouredto be able to represent LHM at Jack’sevent in February where a number ofvery talented young people performedon behalf of other children born withsingle ventricle heart disease. Manyof them have been friends of Jack'sfor many years and wanted to supporthim in his endeavour to raise moneyto support this year’s LHM Open Day.It was wonderful to see Jack on hisbig night. An entrepreneur and truesupporter of LHM, a family trait as£3,192. Special thanks also to KevinSedgebeer and the Somerset BikeRally who raised £1,000. Gary hasbeen writing a blog to help him putthoughts and feelings on paper whichcan be viewed at http://garypethick.wordpress.comOur own entrepreneurJack Negus is nowraising the houseas well as fundshis father was one of the foundingTrustees of the charity. He is awonderful example of someone whohas not allowed his heart condition tostop him being an individual or strivingto achieve all he can. Thank you Jack,from Suzie and all the staff at LHM.

TM Lewin are tip topHip Hip Hurray forHoyerA huge thank you to Hoyer UK whohave chosen us as the recipient oftheir company incentive scheme. ColinEdmonson, an LHM member, verykindly nominated us. Above are threeof the hundreds of children who willbenefit from this donation.GreedyPig and anXBox!Ryan Harris fromWalsall has kindlyorganised an Xbox FIFA11 Tournament at school raising £100,and has placed a collection box in theGreedy Pig Cafe in Walsall - thank youRyan for all your continued support.TM Lewin, the leading retailer of distinctive business attire for both men andwomen have chosen Little HeartsMatter to receive the proceeds fromsales of single use carrier bags inWales as they believed the summay be small, they have shown theirgenerosity by 'rounding' it up to £1,000.Thank you to Kevin Blumenthal.Santa's little helpers havea dip in the North SeaGary Cosker and his dog Charlie took partin a sponsored dip at Redcar beach in aidof Little Hearts Matter, following a friendat his local pool club making him aware ofthe charity and the support a little boy heknows had received from us.And to bring the fun factor to what wasa very chilly event, Gary dressed up asa pixie and Charlie the dog as Santa. Ahuge thank you to you both – the outfitsare fabulous and we hope you have nowwarmed up.LHM Football Cup 2012A massive thank you to David Burn and everyone whovolunteered / helped and took part in the Little Hearts MatterFootball Cup 2012 in Newcastle. Altogether they managedto raise a staggering £4,200 from the matches, a raffle andother activities on the day. Thank youfor your generous support!Andfinally...My son Ian Wilson was born in 1997with HLHS - he is now an active 14 yearold who is doing well at school, playsviolin, golf & bowls and is working forhis President's Badge in Boys' Brigadeand is a typical teenager!I am also Brown Owl of the 33rdGlasgow Brownie Pack based inSpringburn Parish in Glasgow. Thisyear the Brownies decided that theirfundraising event would be a BigHearted Bake to raise funds for LHM.We held the event earlier this year andraised the sum of £225.00.We received £32.18and this letter fromDamien Smith-Turrell"My name isDamien. I am five. My baby brother wentto heaven because his heart was broke. Isaved lots of pennies to help the babies,from Damien."You are a true superstar Damien.A huge thank you to the Robinsonfamily who have very kindly fundedthe latest LHM publication, the Fontanbooklet which providesinformation about theoperation, what you canexpect to happen whenyou go into hospital andthe changes you maynotice afterwards.Please contact the officefor a copy.Making a donation throughCharityGiving is simple.Charity Giving will reclaim giftaid tax on your donation (if youare a UK taxpayer), meaningany donation is worth around25% more.They also charge less than mostother fundraising websites, somore money goes to this greatcause!It’s also very easy to set up!Just visithttp://uk.virginmoneygiving.com19

Spotlight on...In each edition we feature articles where we talk aboutdifferent aspects of education and / or ideas about possiblesources of financial support to help you.Written byIsabel BaumberBenefits - Accessing benefits workshop20This article will cover some of the areasdiscussed at the recent Open Daybenefits workshop. The workshopaimed to make people aware of some ofthe ongoing sources of financial supportwhich might help them with their day-todaycosts supporting a child with a singleventricle heart condition, and to learnfrom each other’s experiences ofdifferent benefits and funds. We alsospent some time talking about currentdevelopments in this area.Support might be available to help witha whole variety of costs, ranging fromdaily living through help with bills, toleisure activities. It comes from sourcessuch as central government (eg DisabilityLiving Allowance, Carer’s Allowance),local councils and other funds such asthe Social Fund. Individual charitiesmay also be able to help with specificcosts. More information about all ofthese can be found in our Benefitsbooklet, available to download from ourwebsite www.lhm.org.uk in thePublications and DVDs section, oravailable from the office.We talked about how difficult it seemsto be to successfully claim DisabilityLiving Allowance (DLA) at the moment.As it is so important to help the personreading your child’s form to understandhow their condition impacts on theireveryday life, we recommend coveringfour areas in your answers to eachquestion:describe the problems your childPhas with that activityPexplain the help they need (evenif they don’t get that help)PPexplain why it is important forthememphasise how this is different totheir peersLHM are happy to look through yourapplication form before you send it in,but should not be included as an expertvoice at this stage in the process. If yourclaim is unsuccessful, you can ask for areconsideration, where a differentdecision-maker will look at theinformation you have already sent in. Ifyou are still not successful, or you havea different rate to the one you think youshould be entitled to, you can appeal.LHM can write a personalised letter tosupport your appeal.Members of the group very kindlyshared their experiences throughout theworkshop, but especially in relation toDLA appeals. A couple of families hadbeen successful at appeal, and had alsoreceived an apology because the originaldecision they had received had been sobadly wrong. Families were keen tostress to other members that it is worththe effort of going to appeal, but onefamily also emphasised that you must becompletely happy with the informationyou write on your application – neveruse a set answer without checkingwhether it applies for your child.In terms of recent developments, achange has been made to eligibility forhelp from the Family Fund. It is now onlyavailable for families who receive incomerelated benefits, rather than having aceiling income level. There is also a newphone number 08449 744 099. Furtherinformation can be found at www.familyfund.org.uk.A key change we need to keep informedabout is the proposed new ‘PersonalIndependence Payment’ (PIP), which willcome into effect from April 2013 for adultsof working age, ie between the ages of 16and 64. This benefit will replace DLA. Itwill be introduced gradually and thecurrent plan is that young people alreadyreceiving DLA will be the last group to bemoved across from DLA to PIP, and thiswill be in 2016. There will be no automaticentitlement, so young people will need tobe separately assessed for PIP. Currentlyavailable official information states thatthe government has no plans at themoment to use PIP for children under 16,though there are proposals underdiscussion about merging healthcare,education and social service assessmentsfor children leading to a single supportplan. We will endeavour to keepmembers informed about developmentsin this area as more information becomesavailable.Please don't hesitate to contact theLHM office if you have any queriesabout any aspect of education. Wehave booklets available on 'EarlyYears and Infant School', 'JuniorSchool' and 'Transition to SecondarySchool' which are available free ofcharge to members. We also havea more detailed pack for familieswho feel that their child many needadditional support in school.We also have a Benefits Booklet,which covers a whole range ofideas.We'd be really pleased to hearabout any other ideas membershave, or you would like to shareyour experience.

Stop Press...stop press...stop press...A new form has been launched for applying for Disability Living Allowance (DLA) for a child under16. We understand that it is being rolled out gradually across the UK, with the roll-out having startedin February. The new form is quite different to the form which has been in use during recent years– it has more questions with tick box answers, and less space for written answers. We are urgentlyworking on updating our sample answers document, and will make this available as soon aspossible. In the meantime, if you need a pack from us to help you with renewing your child’s DLA orapplying for the first time, please let us know whether the form you are completing is dated February2011 or November 2011, so that we can support you appropriately. And whichever form youcomplete, please remember to keep a copy of your application!Education is such an important area oflife, but we know that it can be difficult forchildren with single ventricle heartconditions. Schools are communitieswhich try to meet the needs of childrenand young people who have a range ofneeds, which may have learning, social,medical and or emotional implications. Itcan be challenging at times for schoolsto quickly and fully understand andappreciate the challenges of living with asingle ventricle heart condition.Experience has shown that trying tokeep communication open, developing agood relationship with a key person andencouraging a team approach in workingtogether with the school usually has amore successful outcome. Howeversometimes, communications breakdown either with the school, the LocalAuthority, or with both bodies. Thisarticle gives some tips on how to keepthe channels of communication as openas possible.1. Regular informal contactPrimary school:• a quick chat with your child’s classteacher at the beginning or end of theday,• a home-school book or diary mighthelp, as a way for sharing information inboth directions, such as information fromhome about a change in medication or adifficult event which has happened, orinformation from school about aparticular achievement or an area whichmight need to be followed up,• email contact with a key person e.g.teaching assistant, teacher or SENCO(Special Education Needs Co-ordinator)is quick and easy.Secondary school:• a weekly phone call with a key person(teaching assistant or form tutor)• email contact with a key person(teaching assistant, teacher or SENCO)is quick and easy, an invaluable way tokeep in regular contact.2. Find out who the school’s SENCO is,and arrange to meet them on a regularbasis, perhaps every six weeks. If yourchild has identified special educationalneeds, these meetings should be set aspart of a formal process of target settingand reviewing. Even if your child doesnot have any identified specialeducational needs, it would still be worthgetting to know the SENCO, and askingthem to keep an eye on your child’sprogress and any areas of difficulty.This could be part of a series of regularmeetings for the team around the child /team around the family which can bevery useful to focus timely interventionsand support.3. Keep your child’s school informed ofany changes in their medical status, andhelp the school to increase theirunderstanding of your child’s condition.Use the tools available from LHM suchas the education booklets (Early Years &Infant School, Junior School, Transitionto Secondary School) and the DVD forsecondary school age children. Ask fora copy of the relevant publication to takeinto school for the staff to look at andkeep for their reference.4. Prepare carefully for planning andreview meetings. Make notes before ameeting, as it can be difficult to putacross your point in the heat of themoment, especially if you have adifferent view to some of the other peoplewho are present. Make sure you alldiscuss both your child’s achievementsand also any areas of difficulty. Keepnotes of conversations and meetings,especially regarding any actions whichare agreed. Make sure that all relevantpeople are invited, and ensure keypeople are available to attend. Youmight find your child’s Cardiac LiaisonNurse is a key contact before starting anew school. Your child may have acommunity nurse or the school nurse,who will have written a care plan may beable to attend meetings on a moreregular basis to ensure that the medicalEducation - Communicationangle is covered.5. Find out who can help you. Mostareas have some kind of specialistsupport which is part of the local authorityand works with schools in a variety ofways, to help meet individual children’sneeds. The name of this service will bedifferent across the country, but it mightbe something like ‘Specialist InclusionSupport’, ‘Learning Support Services’ or‘Access and Inclusion’. Staff within thisteam are usually from a teachingbackground, but have extra training in aparticular area of children’s additionalneeds. This means that they are able toact as an advocate for the child, but alsocan understand the perspective of theschool. They can visit school to discussyour child’s needs, and have a range ofideas and resources which might help.Another very useful contact is your localParent Partnership representative, whocan advise you over the phone, and inmany cases will accompany you tomeetings if you would like them to. Theirdetails can be found on www.parentpartnership.org.uk.6. You might need to equip your childwith the tools to express themselves ifnecessary, for example if they are beingasked to do an activity which would bedangerous for them during a PE lesson.Depending on the child, they may needsome support to learn to be assertive,but not rude!We recognise that communicationbetween parents and schools can bedifficult, and we know that our membershave many examples of a school notunderstanding or not taking into accounttheir child’s heart condition. However,we would really like to help and supportour member families so that they canwork in partnership with the school asmuch as possible. The teachers andschool will usually also want the best foryour child.21

NoticeboardThe InformationStandardAt LHM, one of the key ways we support our membershipis through producing information about medical topicssuch as the details of each single ventricle heart conditionand the different stages of surgery, and also about lifestyletopics such as education or feeding. We have alwayshad fairly rigorous processes in place to make sure ourinformation is accurate, such as by asking experts toreview draft information. We also ensure that it is relevantto members by asking for comment from our informationreview team, who are all parents of children with singleventricle heart conditions.This year, we are planning to formalise these processes byworking towards a new accreditation called the InformationStandard. It is a Department of Health initiative to give thepublic confidence when they are looking for health andsocial care information so that they can readily identifywhether the information is from a trustworthy source. Itis a bit like a kite mark, and we are proposing to worktowards this standard for all of LHM's medical and lifestyleinformation (printed and web-based).Many larger charities and a number of NHS Trusts alreadyhave the Information Standard accreditation in place.We feel it is extremely important for us to achieve thisquality mark so that everyone can have confidence in theinformation we produce, knowing that our processes havebeen audited by an independent external certificationbody.We will keep you informed of our progress during the year,and will of course let you know when we have successfullygained our accreditation.CPROver the past few months the British Heart Foundation havebeen running a series of adverts encouraging people to do handsonly resuscitation if they find someone who has died suddenly.Vinnie Jones shows everyone how to do the heart massage.Some people are confused that only heart massage is nownecessary to help someone whose heart has stopped. If youhave had training in offering resuscitation and you are confidentto offer mouth to mouth resuscitation as well as cardiacmassage then follow the training that you have had because fullresuscitation done correctly can really help.If you would like to learn more about resuscitation then contactthe Red Cross or St John's Ambulance in your area and signup for training. Some hospitals also offer training to familieswho have a child with a heart condition so ask when you nextgo to outpatients.DIARY DATESOn Your Marks for Little HeartsSunday 13th May 2012Worthing Sea FrontConversation with Ruth Rendalland PD JamesOctober - date TBCLights of LoveSunday 9th December 2012StaffordshirePublication ListDon't forget the following publications and pto members - to get your copy just call the oinfo@lhm.org.uk or visit www.lhm.org.uk.Antenatal Information PackPreparation for Hospital BookletPreparation for Hospital Pack - to boBenefits - a guide for parentsFeeding at Home - a guide for parentEarly Years and Infant School EducaJunior School Education BookletTransition to Secondary School EducDental CareBaby / child DLA sample packFontan bookletInformation filofaxCongAwarThis yeaAwarenessof the Childgetting invogreater awaboth beforestories fromantenatal ditheir new baknew that thIf you havejust get in toThe week wLHM starts that our Worthraise muchawareness oPlease remyour comples22

enital Heart diseaseeness Weekr the Congenital Heart Diseaseweek will start on the 12th of May. Allren’s Heart Federation charities will belved. This year our aim is to raise areness of the need for better diagnosisand after birth so we are looking forfamilies who did or did not have anagnosis or perhaps a family who tookby home from the hospital before theyey had a heart problem.a story that you would like us to telluch with us on 0121 455 8982.ill comprise of a number of activitiese push on Sunday the 13th of Maying Run. Join us there and help toneeded funds and a greaterf the needs of the children.acks are available free of chargeffice on 0121 455 8982 or emailDirect 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:_________________________rrow for a period of 3 weeksWe 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.s.tion Bookletation Bookletember to take a copy ofted DLA forms before youend them off.IAdd 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.23

Little Hearts Matter11 Greenfield Crescent, Edgbaston,Birmingham, B15 3AUTel: 0121 455 8982E: info@lhm.org.ukwww.lhm.org.ukOver to you24Helena Lilley (6)excited to be meeting MickeyMouse at Disney land ParisTyler McCusker (3)visiting SantaGeorge Sutcliffe (13)and his brother Tedhaving arrived in styleat the LHM Open DayJohn Wyllie (10)on a trip toMcClaren HQKori Parkin-Stovell's (7mths ) first ChristmasThis page is for you – the members of LHM. Send us your picturesor stories – achievements, things that have made you proud –however big or small. If your child has swum a length of the baths,or gone off to their first day at school or nursery, we want to knowabout it! This is YOUR page – if there’s something you’d like tosee – let us know.Email your pictures, stories, recipes and ideas to info@lhm.org.ukBarnaby's UpdateFirstly, a huge apology to SharonHadley, who requested Barnaby to goaway with her and her daughter Lucyto Disneyland Paris in June. Sadlyhe returned later than expected fromhis previous travels and was unableto go. We know he had been reallylooking forward to it and was sorry hecould not make it.But in September he went on a veryunusual adventure around the Isle ofWight with Eric and Annette Martin,great uncle and aunt to Hollie Raffo.They had already planned a trip withthe Essex Austin Seven club andkindly decided to take Barnaby alongfor the ride. He travelled on a ferry,visited Calbourne Mill and OsbourneHouse and met lots of lovely people.As the classic car’s top speed wasabout 30mph Eric and Annetteasked friends and family to sponsorthem and managed to raise a brilliant£483.00 at the same time. Picturedis Barnaby with Eric & Annette andtheir car “Colonel Mustard”.He also headed off on holiday withChristine Highams to both Turkey inApril and Rome in Septemberwhere he met lots of friendlypeople, saw many of thesights and even popped intothe Colosseum to watch theGladiators do their thing –but sadly he was about 2000years too late.And before we run outof space we can add thatBarnaby did also travel toWorthing in June and go on a topsecret trip but he assures it wasbrilliant and a lovely time was hadby all. He had a quiet Christmas butgot to meet all the new LHM teddieswe now have in stock (see themerchandise page on our website)and is hoping you will all invite himon your adventures this year.