Here - Little Hearts Matter

A Time To RememberBelow is a report on theRemembrance Afternoon, thisis a lovely account of theafternoon, as we hear from ourmembers who have lost theirprecious babies and children.On Sunday 29 September a bereavementafternoon was held at the Moat House Hotel,Acton Trusell, Staffordshire.This was the first time in quite a few yearsthat an event specifically for bereavedparents, siblings and families had beenarranged.Fifteen families attended the event fromvarious parts of the UK. The main aim of theday was to provide families with theopportunity to meet and to offer support andreassurance to each other. It can becomforting to know that feelings they may beexperiencing are totally normal, that they arenot alone in dealing with their own tragedies.For some families, that attended, the deathof their child had been a matter of daysearlier, for others it had been some fourteenyears ago, however, although circumstanceswere different the compassion betweenparents was ever present.Parents could share pictures of theirchildren along with their own personalstories on a display stand. It was lovely tosee the photos and to show off our babies,this is something that can be hard to do withother people who can be frightened ofseeing pictures of a baby who is no longeralive.For all of us it was a great comfort to knowthat everyone in the room, even thoughindividual experiences differ vastly, wouldunderstand why it is important to celebrate alife no matter how short. It is not alwayspossible to do this in a public way as manypeople often seem uncomfortablecelebrating the life of a baby who is nolonger with us physically.Each of us were encouraged to get toknow each other over a cup of tea. Beforelong, experiences and treasuredphotographs were being shared. Theoverwhelming feeling was that this was aunique experience, with everyone fullyunderstanding how each was feeling and nopretence to protect the feelings of otherswas required. It was good to be able to talkopenly without fearing you were upsettingthe other person. It also provided each of uswith an insight into how others have copedor are learning to cope with their tragedy. Forthose of us where the condition was notdiagnosed until after the birth and where nosurgery had taken place it was anopportunity to talk with families who hadexperienced the various stages of treatmentLater on in the afternoon we held an informalcandle ceremony, Suzie lit a candle and all thefamilies, (moms, dads, brothers, sisters and insome cases friends) had the opportunity if theywanted to say a few words for their child. We all litour own candle from the central one and spokea few words in celebration of the precious lives.Some had prepared a speech; others shared apoem or a reading that had brought them comfortduring their times of need and some simplynamed their precious child. We then stood for afew moments remembering not only our ownchildren but also others who were not able toattend that afternoon.After the candle service we then had time tochat over sandwich and cakes, the cakes beingof particular interest to the brothers and sisterswho were in the room!The whole afternoon was conducted in a reallyrelaxed and informal fashion, no pressure beingplaced on people and open discussion flowedand new friendships were formed.I think that everyone who attended wouldagree that the afternoon was a great successand gave us all the chance to both reflectand celebrate our children's lives. It waslovely to meet others who 'understood', nolong explanations to meet others who'understood', no long explanations beingneeded and no excuses needed for tears.Hopefully friendships were formed that willhelp in the months to come.Some of us met up again at the 'On YourMarks for Little Hearts' run at Shugborough acouple of weeks later. This was a greatoccasion where families could support thecharity irrelevant of their own personalcircumstances. It was lovely to see somerunners with pictures and messages proudlydisplayed for all to see chatting with otherrunners whose children were participating atthe event.The event will be held next year (2008) atabout the same time of year. It would begreat to see you all again and if you have anysuggestions or questions please contactLHM.Peter & Judy GrovesJessicaMy baby sleeps in a field of dreams,a promise of life, now broken.My baby sleeps in a field of dreams,never to be woken.My baby sleeps in a field of dreams,innocent, untouched, unknowing.My baby sleeps in a field of dreams,gold light surrounds her, glowing.My baby sleeps in a field of dreams,but now our dreams are shattered.My baby sleeps in a field of dreams,but she was real, she mattered.My baby sleeps in a field of dreams,through wind and rain, unaffected.My baby sleeps in a field of dreams,an angel now, protected.I’ve held an angel in my arms.Lord, how blessed am I ?To hold this angel in my arms,my baby had to die.Sweet Dreams, Little KittenDedicated to our daughter, Jessica Thayne Lunn02/09/06 - 04/09/063

FeatureHere we take a look atwhy it is essential to keepyour child warm andincludes some tips fromother parents.4When the cold weather is upon us, it'stime to think about ways to keep thechildren warm.Poor circulation (movement of blood aroundthe body) and an inability to exercise to keepwarm is a problem for many children with asingle ventricle heart condition. Often their feetand hands feel like ice and their lips go blue veryquickly when the weather is cold.In these days of centrally heated housesmany of us don't think of the simple ways to keepwarm so here are some ideas of how to keepthose noses from catching frostbite.• Pile on the clothes. Lots of thinner layers arebetter than one thick one, as they trap, andwarm, air. Go back to buying vests; lots of shopshave good thermal ones for children. Put tightson under trousers and put socks on top. Yeseven on the boys. Batman wears tights! Find ahat with earflaps and nice thermal gloves. Try thelocal ski shop, they have gear especiallydesigned for very cold weather.Gill Cloke says “Michael hates wearinggloves! I had to resort to the old remedy oflong string/ribbon attached to each &through the coat sleeves; this helps withlosing them but doesn't solve the problem ofhow much he hates wearing them in the firstplace. The problem is he can't keep hold ofBrum/Thomas/Lightning Macqueen whenhe's got his mitts on…! The only way round itwe found was to either get Thomas gloves(and we promptly lost one); or to make a acharacter - I did try making a very basicpuppet on a green pair - a few felt trianglesup the back and a couple of eyes - and hequite likes his dragons. Though I suspect hewould always prefer to be without, basically(and his hands do go black….)So the other remedy is a buggy-bag with abig front pocket - in which you can put bothhands AND Brum! We were very lucky andgiven a lovely fleecy buggy-bag with a bigpocket, but it would be relatively easy to sewa flap on the front I would imagine. I ambetter at persuading Michael thatBrum/Thomas is cold and needs to staywarm in the pocket than at persuading him tokeep his gloves on…”• Warm up from the inside. Have hot cereal forbreakfast; warm the morning drink of milk. Makehot chocolate or tea for snack time. Have soupwith a sandwich for lunch and plan warm snacksthroughout the day. Remember that yourchildren need little and often so you'll be helpingtheir diet and keeping them warm.“Our family are quite big porridge eatersanyway, which made it quite funny whenMatthew's nursery class were doingGoldilocks and the Three Bears. They all hada taste of porridge, which didn't go down toowell with most of the little ones, but, in trueGoldilocks style, Matthew ate it all upbecause it was 'just right'!.”Isabel BaumberIdeaSprinkles on porridge!Gill says “one of our first reallysuccessful ‘lumpies’ was pink and purpleporridge, with coloured sprinkles -encourage them to eat the firstlayer, then sprinkle again!”• Cover those noses. Remember scarves or abalaclava can help keep those noses warm.• Snug in bed. All in one nightclothes with extrasocks can help when the duvet slips, manycatalogues have all in one suits for olderDuvet grippers £6.99 from Great Little TradingCo (to keep the duvet tucked in)http://www.gltc.co.uk/fcp/product/-/bedroom%20essentials/Duvet-Grippers/879A charity called Fledglings has lots of products forchildren with special needs, including some all-inonesleeping suits for older children. They can becontacted by phone 0845 458 1124 or emailenquiries@fledglings.org.uk.Polartec trousers, can be worn over regularAnd some useful products:Michael Smith wrapped up and ready to playin the snowchildren. If it's really cold, how about using asleeping bag."My personal 'obsession' is keeping Matthewwarm in bed. Ever since he was a baby, hehas gone extremely cold when he is deeplyasleep at night. When he was a baby, I madesome sleeping bags (Grobag style) fromfleecy fabric with long sleeves and gloveson. Now he's bigger, we have bought agoose down duvet (his duvet was probablymore expensive than all the rest of thefamily's bedding put together!), and I haveput fabric flaps on all his duvet covers sothey tuck in".Isabel Baumber• Sore lips. Prevent sore lips by using lip balmor simple Vaseline.• Runny noses. If a runny nose persists, seekadvice from your health visitor or the G.P. It mightdevelop into an infection.If you have any other ideas let us know.Suzie Hutchinsontrousers or by themselves. They can be boughtfrom JoJo Maman Bebe either online atwww.jojomamanbebe.co.uk or call 0870 241 0560and cost £12.Wrist cosies are a good alternative to gloves.These can be bought from Muddy Puddles atwww.muddypuddles.com for £5 or you can callthem on 0844 557 4950.Long sleeved vests are a good idea and can bepurchased from most retailers.

Below is an overview ofthe Little Hearts MatterAGM and Open Day heldon Sunday 11thNovember 2007.Open DayThe Open Day was at Staffordshire thisyear, in the very friendly BretbyConference Centre in Burton-upon-Trent,with accommodation, which was great for us -much easier to schlep around between talks andforgotten items in the room! Not only that, but itmade a very easy and welcoming venue for thetraditional social do on the evening before, whichis always so appreciated by those of us who'vecome longer distances to get there - this doalone justifies the accommodation cost!If you live close by and may not have chosento come to the social the night before, westrongly recommend it, it's a great chance torelax and do some catching up with folk you onlysee at these events, and spend time marvellingover the kids (yet again) - particularly as theywere having a ball with organised games andactivities laid on by those wonderful folk at theoffice and their ace youthwork teams... We couldjust sit, and watch, and wonder. This is the (forus) great unmissable draw of these events - notjust the chance to get more crucial information,but the opportunity to chat with parents who are'walking alongside', and let the kids play withothers like them, where all of you can sharesome common understandings.The Open Day itself was the usual mix ofserious business and serious socialising - oftalks, presentations, charity business meeting, awelter of positively head-spinning information(often coming at you at high speed andfrequency), mingled with more mixing andnattering; and we want to say a big thank-you tothe organisation, because this is made so mucheasier by the provision of a Creche facility andsupervised activities for the older kids - so greatto know our wee ones are well looked after whilewe got some serious time to concentrate onthinking about them but without being distractedby the little darlings!The theme of the meeting this year wasIan Ash addressing LHM members duringthe AGMEducation, covered by a variety of professionalsand standpoints. A range of professionals werepresent during the day, including the DeputyHead of the Education and DisabilityDepartment of Levenes Solicitors, two EarlyYears Inclusion Officers, a Disability Adviserworking for a national charity, a ParentalSupporter from a local Parent PartnershipService and a Personal Adviser fromConnexions Staffordshire. These offered adviceon a huge range of topics through age-grouprelated workshops (from Pre-school and InfantSchool, Junior School, and Senior School andbeyond) and covered issues such as childcareand starting school, settling into junior schooland preparing for senior school, finding the rightschool, special needs and statementing,inclusion and disability rights, 'Early Support' andother forms of family support, how to manageschool as a working parent, legal rights forworking parents, how to address problems withstaff and access appropriate extra support -even, rather dauntingly, how to take your LocalEducation Authority (LEA) to a tribunal (notrecommended, but just in case of need…!)As will be clear from that shopping list, a hugeamount was covered, more than we canSome of our little members enjoying the daySophie Green & Carys Allen talking abouttheir school experiences in the videopossibly report on here - more information on theexact content of the talks and workshops willshortly be available from the office or via thewebsite. It was absolutely non-stop, and totallyfascinating; exhausting, that goes withoutsaying, but so worthwhile. Several days neededafterwards to absorb everything - and little offshootsare still springing up from things welearned there that we're now trying to pursue, inour case with nursery and primary age children.Two highlights in particular. First was thepresentation of a Diana Award - for showingpersonal courage and "demonstratingoutstanding qualities in overcoming adversity" -to Ben Hall. He was put up for this aged ten for anumber of reasons - his own courage withcoping with HLHS, the way he helps otherchildren regardless of their needs, how he hasspoken to parents about managing his heartcondition, and his wonderful support of his familyin their bereavement following the death of hisyoung brother; he's the youngest person ever toget one, and a hugely worthy winner. We alsoparticularly were struck by the 'Video Corner'session with Kassie (LHM's youth worker),where the older kids get the chance to discusstheir issues with school - so there really issomething here for the young people as well,and footage from some of these were shown inthe Open Day and made a big impact. (…AndOH how we look forward to being parents ofteenagers!!)Gill Cloke & Lindsey Hooks5

Henry’s StoryOur story as told byRobert BrombergAt last I feel able to write of our experiences over the past year. Henry was born as the result of a hardwon pregnancy and two previous miscarriages. This pregnancy was proceeding like clockwork untilthe twenty week scan. I should have been suspicious like my wife Laura when the sonographercouldn't see part of the heart and asked the specialist to have a look. She said that Henry wasprobably lying awkwardly and asked if we would like to go to Bristol where their scanning equipmentwas better. I naively suspected nothing although my wife as a natural pessimist knew for sure thatthere were problems and she was right. We saw the paediatric heart consultant in Bristol and duringthe scan the atmosphere got quieter and more sinister. "Have you got any major congenital heartdisease on either side of your family?" she asked, and I knew that our world was about to collapse.She explained what a univentricular heart was (which I had never heard of) and what HypoplasticLeft Heart Syndrome and an unbalanced AVSD meant with diagrams on the back of an envelope. Wewere 'counselled' with termination recommended as the best option. A palliative care procedure wasexplained, but all the awful consequences were made clear to us and it wasn't recommended. I wentinto shock and was led blindly around the hospital unable to speak by Laura. The hospital did notsuggest any organisation or support group that we could access. Fortunately, the shock had passedfor me by the next day and when the worst effects had hit Laura I felt able to research the internet anda telephone enquiry to the British Heart Foundation elicited a recommendation to LHM. Thankgoodness because Suzie Hutchinson (who I am profoundly grateful too) spent two hours on the phonewith me, and confirmed in my mind that we would keep him, a decision that Laura had long sincecome too. To my shame I was so angry with our unborn boy that I refused to talk and sing to the'bump' or 'Little Junior' as he was known before birth. I would mutter to him, "you only had to growproperly and you failed in that". I am very upset that I ever did such a thing. Of course it wasn't his faultand I resumed singing and talking to him, but the experience of pregnancy for both me and inparticular for Laura was ruined. We had the experience of going to the NHS birth preparation classwhere we were all told to look forward to our new healthy, bouncing baby. The women leading theclass even knew about our plight and rightly looked embarrassed!!Henry was born in Bristol on 15th September 2006 (he was 'too risky' to be born locally). He wastransferred to Birmingham at 3 days old, since his condition is not dealt with at Bristol.The experience of having a baby whose chance of death without surgery at six days old is 100%, andwhose chance of death with surgery is 30% is an unbelievably heart wrenching and emotionalexperience. Carrying him down to his first operation felt like an appointment with an executioner.Fortunately the man who met us at the doors of the theatre looked like an even more genial relationof Santa and treated Henry like the most precious person he had ever met. Henry survived thankgoodness after an awful six hour wait! With what we came to understand as the normal ups anddowns in ITU he had some scares but Henry came through. He stayed in Birmingham for threeweeks and then returned to Gloucester for eight weeks to learn to eat, but he never did and returnedhome on a naso-gastric tube, several medicines, and a feeding pump. The challenge then reallybegan for us without any nurses, left alone to care for this very vulnerable little boy. We were doingwell until the December check-up just before Christmas.Another consultation, another consultant and another quiet, sinister moment we had come todread. Although Henry still appeared well to everyone, there were no femoral pulses detectable byfeel and the scan showed only the most flaccid of heart movements. It was severely impaired andfailing rapidly. Henry was hours from death. The wonderful Dr Wright that evening, December 22ndstayed on to catheterise his heart and balloon out the scar tissue that had built up in the Aorta. I hadthe second experience of carrying Henry to surgery, bursting into tears and enduring the wait fornews. I will always remember Dr Wright coming up the corridor with his thumbs up in the air. Henryremained in hospital for only a week, rather than the month that was first anticipated … served meright for teasing my wife all year about the possibilities of eating turkey in a hospital canteen forChristmas. Henry returned home on the penultimate day of the year and on New Year’s Eve, withour precious boy at home, we finally had Christmas Day with our family.6In January another catheterisation proved that Henry's heart had very impaired function, but was nowslowly mending. Apart from on-going feeding difficulties and poor sleeping (this continues to this day)it was lovely having Henry at home. True, Laura's maternity leave where she should be enjoyingbonding with her little boy was marred by the punishing medicine and feeding regime, multiple andcontinuous appointments and the need to avoid bugs, and therefore other parents, children andbabies. However, he was alive and mega-cute. Henry has always been a big communicator and withhis cheeky smile and love of people every trip to the supermarket brought and still brings a string ofnew admirers.

Having 'bounced back' with determination, our little fighter once again ran into trouble in March.Though due for his second stage operation, he couldn't wait the few weeks for planned surgery.Our community nurse came out and saw him have a grey-blue fit and advised us to call anambulance. In Gloucester Children's Centre which is normally a calm, friendly hospital unitHenry’s oxygen saturations were in the low 30's and dropping. Someone had clearly hit a panicbutton and suddenly people were running from everywhere. I have never seen so manyregistrars, consultants, crash team, sisters and nurses in one spot. They saved Henry and laterthat night he had yet another 90 mph+ blue-lighted ambulance ride to Birmingham. Next day Icarried him once more to his operation with yet another gut rending wait to see if it had beensuccessful. He left Birmingham in only four days and went back to Gloucester to recuperate whichhe did for another five weeks. By May he decided to give up eating altogether and became nil-bymoth by elect. He joined our local nursery for special children to learn to eat.It is a wonderful place staffed with dedicated and wonderful people. It was soon apparent that theemphasis for all the very young children was to have fun, fun and more fun.There were interesting toys and exciting multi-sensory experiences. Henry was particularly partial topaint, which he liberally covered himself with, and everything around him. The children get toexperiment with a wide range of textures and substances. Food is part of that rich experience. Touchit, play with it, roll it around, sniff it look at it, sing about it and make a great mess with it without anypressure to taste it or eat it. Henry just loved the whole thing - as long as he did not have to touch thejelly!The breakthrough came in August 2007 when extra sessions of 'food camp' were held. One daywhen singing about currant buns, Henry picked his cake up and began demolishing it and thendemolished another one belonging to the child sitting with him. He was away … and hasn't lookedback since. He began to experiment with Wotsits, Skips, Custard Creams and a variety of fruit. ByNovember he would try anything and out came the naso-gastric tube.This has changed our life. In toddler group he looks and acts no differently to any other child. He isalways happy and content, which he has been since birth unless he is ill and is a joy to all.During the year Henry has become a little celebrity.In October 2006 he became the symbol of the Gloucester Hospital campaign to ban smoking intheir grounds and he made first page in the local paper 'The Citizen'. His heart condition touched all.In August 2007 he became the mascot for heart valve donation at Birmingham Children'sHospital and appears on their website.On the day of the launch in between catnaps in his buggy and tasting very small quantities offood he was determined to communicate and smile with everybody there, as he clearly thoughtthey had all turned up to see him. This included nurses, surgeons, representatives of charities,employees of the heart valve bank and visiting dignitaries.Despite some of the harrowing and emotional experiences over the past year wehave still been incredibly fortunate. We still have Henry, and he is the mostadorable and engaging little boy. Each day I wake I am thankful that he still remainswith us.We have been able to surround him with love especially with the help of Laura'sparents who are both young enough to have the energy and have the time as theyare retired. They have given up hours and hours to support the three of us both athome and in our frequent visits to hospitalHenry has developed a character of his own. He is obsessed with Thomas theTank Engine and seems to love everything about him, the other engines, the toysand the TV programmes. We have already visited him at the GloucestershireWarwickshire Railway our local steam venue and he is booked on the SantaExpress.He loves painting, books, people, and other children riding around on the gardentractor with his Dad, going out for lunch, the computer and every one of Dad's manygadgets. Henry has a very happy and fulfilled life. He is having a ball!We so easily could have chosen to have a termination and I understand fully whyothers in wrestling with their conscience come to a different decision. It is certainlyno easy ride to bring a child with a disability into the world. I have not mentioned ourprofound and grateful thanks to all at Birmingham Children's Hospital andGloucester Children's Centre. Nor have I mentioned the fight with the system to geteverything to which Henry is entitled. For example the application for Disabilitybenefit is made as difficult as humanly possible, and local services are a challengeto obtain with the notable and grateful exception of the James Hopkins Trust andAcorns Hospice who provide various respite care and support.However, Henry is good company and a little boy who we are very proud of andlove. He has brought joy to all of us. I am reminded of the LHM motto. "Half a heart,not half a life" and this certainly applies in every way to Henry.7

enefitsBelow are some ideas ofpossible financial supportyou may be able to receive.feeding, warm clothes for winter and frequent hospital trips. Following our previous newsletter article where we suggested some ideas oftail.you. We can’t guarantee that you’ll be eligible for everything listed here, so please contact the relevant organisation directly to explain yourlet us know of your experiences. Thank you.the CAB site has separate sections for England, Wales, Scotland and Northern Ireland).Out and AboutBenefit or Item Main Criteria Means Tested From What Age To Find Out MoreDisability Living Allowance (DLA) If child is unable or virtually No If your child is 3 http://www.direct.gov.uk/en/DisabledPeople/Mobility component unable to walk from age you can only get FinancialSupport/DG_10011731three If your child needsMobility allowanceguidance or supervision whenif he or she iswalking out of doors from ageentitled to thefive.higher rate. Fromage 5, two ratesare available.There are two different levels of financial support available, depending on your child’s mobility needs. The higher rate is the only possibility from age 3 to 5. As withthe DLA personal care component, the application form is long and time consuming.Motability DLA mobility component at No 3 www.motability.co.ukhigher rate. Tel: 0845 456 4566If your child receives higher rate mobility allowance, you can get a car through a purchase scheme to help disabled people to hire or buy a car - you need to haveat least 12 months award remaining.Road Tax Exemption DLA mobility component at No 3 http://www.direct.gov.uk/en/DisabledPeople/higher rate.MotoringAndTransport/Yourvehicleandlicence/DNeed exemption certificateG_10028003from benefits agency.Ask for form DLA 404 from DLA UnitTel: 0845 712 3456Road Tax Exemption - if your child receives higher rate DLA mobility allowance, you can apply to not pay for road tax, provided that car is used only for the benefitof the child concerned.Blue Badge DLA mobility component at No Easiest to apply for http://www.direct.gov.uk/en/DisabledPeople/Mothigher rate. from age 3 with oringAndTransport/DG_4001061DLA higher rate, Contact your local authority.but is possibleearlier if necessaryBlue Badge - parking concessions (places and sometimes prices) - easy to apply for with higher rate mobility component of DLA.Please see individual websites (links available from main direct .gov site) for information about how the scheme applies in Wales, Scotland and Northern Ireland.Disabled Person’s Railcard DLA mobility either lower or No Children only pay http://www.disabledpersons-railcard.co.uk/higher ratefor train travelOr from age 5DLA personal care middle orhighest rate.Disabled person’s railcard costs £18 per year and gives 1/3 off most fares for the person plus accompanying adult.Also local schemes to provide cheap transport for people with mobility problems.Pushchair Individual assessment if child No 3 (possibly 2½) Referral from your GP or physiotherapist.has difficulty walkingPhone NHS direct on 0845 4647 or, in Scotland,NHS 24 on 0845 4242424NHS Wheelchair Service will provide Maclaren Major Buggy or may provide voucher to that value towards a different pushchair. Accessories are not included, butyou may find charities which will fund them.9

A Guide To Benefits - ContinuedHolidays / Days OutBenefit or Item Main Criteria Means Tested From What Age To Find Out MoreFamily Fund Income related (gross Yes Any time 0845 130 4542income less than £23,000www.familyfund.org.uk/and savings of £18,000 orless).The Family Fund provides timely grants to families with severely disabled or seriously ill children, based on families’ views and needs (you can ask for whateveryou need most). Government funded, based on the effects of the disability on the family.Holidays or family breaks have been successfully applied for.Can apply to Fund more than once.Free Swimming Swimming forms a part of No Contact your local leisure centre or pool.their therapy.Some pools will offer free entry to disabled people.Free/Reduced Entry Fees DLA award letter or letter from No Contact the attraction you plan to visit, or look onyour GP giving proof oftheir website.disability.Free or reduced price entry to certain attractions for either your child or yourself as their carer. Some examples are Twycross Zoo - reduced price for child and freecarer, Space Centre - free carer, Warwick Castle - 50% for child and carer, Cadbury World - free carer, Legoland - free carer. Obviously LHM cannot guarantee anyof these prices - they are based on genuine personal experience but should be checked by yourself.One - off special holidays Varies by charity Unlikely Most charities Contact a Family (charity for families with disabledhave age limits, so children, especially rare conditions) has a list ofplease check. these organisations on their website.http://www.cafamily.org.uk/holidays.html#wishesThere are a number of charities, such as the Make A Wish Foundation, which offer special treats or holidays for children who are very ill or are living with severedisabilities. They cover the whole of the UK but have different eligibility criteria so you will need to check with the individual charity directly for further information.The Cinema Exhibitors’ Association Be in receipt of DLA No www.ceacard.co.ukCard Tel: 0845 123 1292This is a national card that verifies that the holder is entitled to one free ticket for a person accompanying them to the cinema. A processing fee of £5.50 is chargedper card and it is valid for three years. For more information or to download a form you can visit their website, it also lists all the participating cinemas.Household CostsBenefit or Item Main Criteria Means Tested From What Age To Find Out MoreWashing machine or extra bedding Varies according to potential Yes www.familyfund.org.uksource of funding.http://www.dwp.gov.uk/advisers/sb16/community.asp#pressure• See Holidays/Days out for description of Family Fund. Washing Machines have been funded where a child is on diuretics.• Community Care Grants from the Social Fund may be available for people on a low income who are under ‘exceptional pressure’.Disabled Facilities Grant Essential adaptations required Not means http://www.direct.gov.uk/en/DisabledPeople/Homto your home. tested if for child eAndHousingOptions/YourHome/DG_4000642• A Disabled Facilities Grant is a local council grant to help towards the cost of essential adaptations to your home to enable you to continue to live there.• Available in England, Wales and Northern Ireland.• Can be a very long process, so get in touch with Social Services as soon as you know that you might need to adapt your home.Free Nappies If child still needs nappies due No Age 3 or above Your health visitor or school nurse should be ableto their disability.to put you in touch with the Continence Service.NHS Continence Service can fund and deliver nappies if your child needs them due to their disability.10

Utilities / Household BillsBenefit or Item Main Criteria Means Tested From What Age To Find Out MoreWarm Front Warm Front grants - qualify No As DLA Freephone 0800 316 6011through DLA entitlement.http://www.direct.gov.uk/en/MoneyTaxAndBenEngland ony.efits/BenefitsTaxCreditsAndOtherSupport/On_a_low_income/DG_10018661Cold weather payments Cold weather payments - Yes JobCentre PlusIncome support with ahttp://www.direct.gov.uk/en/Over50s/Benefits/disabled child premium orConcessionsAndOtherHelp/DG_10018668Child Tax Credit with disabledchild element.Warm Front is the Government’s main grant-funded programme for tackling fuel poverty. If you need help paying for heating and insulation improvements in yourprivately owned or rented home, you may be able to get money from the government’s Warm Front grants scheme if you’re receiving income or disability - relatedbenefits.If you’re on a low income, you may be eligible for a Cold Weather Payment to help you with extra heating costs during very cold weather in your area.Council Tax Benefit Room in your house Yes http://www.direct.gov.uk/en/DisabledPeople/Finspecifically required by aancialSupport/DG_064481disabled person.Contact your local authority or local council to findout if you are eligible.The disabled band reduction scheme aims to ensure that disabled people do not pay more Council Tax because they live in a larger property than they would haveneeded if they were not disabled eg a second bathroom or kitchen needed by that person. Having a disability does not automatically entitle you to a reduction.These are called Rent and Rate Rebates in Northern Ireland. Contact Northern Ireland Housing Executive or Rate Collection Agency.Specific bills Extra water use due to a No 0845 9200 888disability.Thames Water offer help with water bills if customers are high water users due to a disability within the family which requires the use of extra water eg having towash large quantities of clothes and bedding regularly such as due to diuretics.It might be worth contacting other utility providers to see if they can offer any discounts if there is a specific need for additional spending on your part due to yourchild’s disability.Andrea Harris & Isabel BaumberDisability Living AllowanceAids to understanding the application processDisability Living Allowance has been created tohelp severely disabled people with some of thecosts incurred due to the effects of their disability.The allowance is paid to the disabled person.This may be via a carer in a child under the age of16 years.The allowance is tax free and application is notaffected by any savings or the income of thefamily.To apply the disabled person has to have lived inthe UK for at least 13 weeks out of 52.If it is an application for a child they have to beover three months old. The only exception to thisrule is if the child has a life threatening disorderfrom birth and then an application can be madeby a health or social service professional underspecial rules.All applicants have to be under the age of 65.There are two application forms1. From birth to the end of their 15th year.2. 16 years old and above.DLA is made up of two components.1. To relate to the care needs of the applicant2. To relate to their mobility needs.The allowance is not awarded to anyone becauseof their diagnosis, it is purely the care or mobilityneeds that are considered and those have to beconsiderably greater than a peer of the same agegroup.Care ComponentLowest Rate - £17.10The applicant needs help with personal care forpart of the day.They need attention or supervision for at leastone hour each day.For Example• Do they need to be watched for a deteriorationin their condition?• Do they need help with eating?• If they are over 16 can they prepare a fullcooked meal independently.Middle Rate - £43.15If the applicant needs help with personal carefrequently through the day, orSomeone who needs help with care just throughthe night.For Example• Someone who needs nasogastric feeding• Someone who needs supervision becausethey do not know when their conditiondeteriorates.• Someone who needs overnight oxygentherapy.Highest Rate - £64.50This would be available to someone who needshelp with personal care throughout both the dayand the night.For Example• This could mean that they need supervision atnight.• Care must be for 20 minutes or more on eachoccasionAt night means after the last person in the househas gone to bed.Mobility ComponentLower Rate - £17.10Is only awarded in the five years and upwardgroup to someone who cannot walk outside onunfamiliar routes without someone to guide them.Higher Rate - £45This is awarded to someone who is virtuallyunable to walk because of a physical disability.The exercise can lead to the onset of discomfort.When completing the form it is useful to state ifthe applicant has to sit down, how fast they canwalk and what their balance is like.Only having received the higher rate mobilityallowance can someone apply for motability, thisis aid for buying a car.Young people at the age of 16 can learn to drive ifthey are recognised as disabled. Support fordriving lessons can be sought from theIndependent Living Fund.Blue badges are awarded through the higher ratemobility component but can also be accessedthrough the blue badge scheme for a child overthe age of two if a child needs bulky medicalequipment which cannot be carried aroundwithout great difficulty.Suzie Hutchinson11

FundraisingSome of yourfundraising exploitsWelcome to the fundraisingpages where we featuresome of the fabulous fundraisingyou have been doing in support ofLittle Hearts Matter.Please continue to send your photosand stories of your fundraisingevents to paula@lhm.org.uk. Wecan’t promise they will be publishedBIG HEARTED BUSINESSMENWe are really pleased to announce that theElite Chapter of BNI, who meet in SuttonColdfield each week, has adopted LHM as itsnominated charity for the year.Paula HancoxFundraising Officerin the newsletter but we all enjoyreading about what you have beenup to and looking at the photos.If you would like to get involvedwith fundraising and need ideas orinformation to support your event,please don’t hesitate to contactme at the office or by email.I look forward to hearing from you.long they thought I could pogo for. To make itmore fun I did it in a tuxedo.“Everyone had a great time and it was a reallypositive way of remembering our beautiful babyEmma”.AND SOME MORE THANK YOUsIn June this year Corwin Meynell’s Gran openedher garden and held a coffee morning to help raisefunds for LHM. They were lucky, with one of thefew sunnier days in June and managed to raise£500! Wendy put on a bring and buy stall, namethe teddy game as well as live music!DOUBLING YOUR MONEY!Over the years we have given ideas about thisin our newsletters, so I thought that I would tellyou about how I managed to pull various thingstogether to more than double some fundraising.I ran in the LHM run at Shugborough Hall thisyear and with a team we turned £3,700 into£7,700 at no extra cost to our sponsors. Wemanaged to raise this by:• using Justgiving - we were able to send anemail out to 300 potential sponsors (we alsoused paper forms)• company matched funding - I persuaded 5colleagues to join me and E.ON UKmatched £3,000 of our sponsorship• gift-aiding as much as possible raised afurther £1,000.We don't expect everyone to raise these levelsbut by just exploring around the edges, it mightbe possible to increase the amounts we raise.David BaumberPictured with Suzie Hutchinson is BNImember Chris Williams who recently ran inthe Amsterdam Marathon and raised £600.The BNI also presented LHM with a further£320.ANYONE FOR A GLASS OF WINE?Ellie and Richard Steadman raised £1,400 byholding a wine tasting and BBQ in memory oftheir daughter Emma Jane. Ellie said “ Emmawould’ve been two years old in September soit was great to have a party and raise moneyfor the charity”.People paid to taste the wine and there wasalso a raffle as well as Pogo Sweepstake.Richard said “I wanted to do something sillyso decided to get the guests to bid for how“Thank you Granny for raising £500 at your coffee morning”Pictured below is 11 year old John Hands dressedas Harry Potter at his mum’s recent fancy dress,40th birthday party in aid of LHM. The Handsfamily and friends presented us with £223 whichwas funds raised through a raffle at the birthdayparty and a raffle at Amanda Hands dad’s golf cluband a donation from Ragdoll Productions.holding coffee morningsand has had Little HeartsMatter merchandise andcollection tins so thatpeople can donate. Shepresented us with acheque for £94.60 andcontinues to fundraise forus. We are truly gratefulto Lucy for her ongoingsupport.Joe Kilty very bravely ran the Great North Run forLittle Hearts Matter and raised a smashing £1,500!He managed to do the gruelling 13.1 miles in 2hours and 1 minute. Joe commented “The oneminute really hurt!”. Our thanks goes to Joe andhope he has now fully recovered.Sarah Green and Ann Haigh gallantly ran in thisyear’s London Marathon which was the hottest onrecord and raised £1,248.40! Putting on a bravesmile for the camera, they are pictured below,shortly after they had finished. Well done andcongratulations to them bothMrs Lucy Allan and her friends have beenfundraising in support of Little Hearts Matter fortheir daughter, 4-year-old Evangeline who hasHLHS, pictured above right. Lucy has been12

NATIONAL COOKIE BAKE 2007Gill, Michael and OliviaOur son Michael has HLHS; for the last threeyears we’ve done the cookie bake through myolder daughter’s nursery, who’ve been terrific,sold cookies for a solid week each time andraised hundreds of pounds. This year however,my daughter started school, so it all seemedmore difficult to organise. However, I did raisethe subject of selling cookies at school withMrs Blackadder, the teacher of P1B - mydaughter’s class - expecting a flat ‘no’. Greatlyto my surprise, however she adopted the ideawith enthusiasm - and asked if they could do itas P1B Enterprise for this year.I’d never heard of ‘Enterprise’ in primaryschool - I don’t know if all of you know about it,but it turns out to be a project that everyPrimary class has to do, every year - it can beabout all sorts of things besides fundraising -but the basis of it is (I think!) that the kids haveto have a topic, find out the facts forthemselves, think up an activity and carry itout, and write up the results - there may beother aspects, but I’m still hazy on the details.But the LHM Cookie Bake fitted the billperfectly, seemingly - and I was just amazed atthe results.First-off they took information gathering veryseriously. They got me in to talk about Michael,and the condition and the charity first; and Ihave to tell you, even though I’m used totalking to people about Michael and telling folkthe basics - I had some sleepless nights aboutthis!... If you’ve never addressed a wholeclassroom of 5-year-olds before - and on sucha difficult topic - you’ll know what I mean! Howwas I going to convey the seriousness, to 5-year-olds?? I kept the story basic but with afew real ‘sticking points’ to remember -Michael’s helicopter ride (from Scotland downto Birmingham), his ‘zipper’ scar (blood andguts always wow with this age-group), andhow Olivia got to visit the Chocolate factorywhile he was in hospital... Olivia also helpedme make the presentation; we started off witha ‘guessing game’ about where the heart wasand what it did (I wish I could have recorded this -it was a hoot!), then Olivia confidently filled themin on the realities - and I may say that this (andthe Cadbury’s visit) raised her street-cred noP1B’s storyboadBells and HeartsFiona and Ian Lunn tied the knot on Monday25th June 2007 almost one year after losing theirbeautiful daughter, Jessica.“We had always talked about getting married,but had always said that we would wait a fewyears and include our kids. When a friend foundout about Little Hearts Matter, I becamedetermined to somehow raise money for them,through some kind of fundraiser. Eventually, wedecided to combine our wedding and Jessica’sfundraiser, so that she was still being included inour big day and so that all our family and friendscould do something to help heal the hurt of herloss. We decided that the wedding receptionwould be the fundraiser, that we would askeveryone for donations instead of wedding giftsand we even asked our suppliers if they wouldtake something off their final charge and wewould donate it to LHM, in their name”.“At the reception, we were able to announceto everyone that they had helped to raise£1,197.05, over £300 of which was donationsfrom our suppliers. I told everyone that our weegirl would be so very proud of them all”.We are very grateful to Fiona and Ian forthinking of us during this happy, yet emotionalday in their lives. Pictured above, are Fiona andend! And after that P1B took over, under MrsBlackadder’s guidance - and for the next twoweeks did wonders. They looked up stuff onthe web, they read ‘easy’ books about heartsand blood, they drew heart cards and LHMslogans and illustrated the whole story on a‘story-board’ wall (and I was amazed by theamount of technical detail they had in theirgrasp), they made a presentation in Assembly;then they set a date to sell cookies, designedposters advertising their cookie-baking andmade invites to send out to all the parents.Then we got down to making cookies. Weended up with hundreds of cookies - enoughfor each child to take home several, anddozens over to sell in school. The mums anddads duly turned up on the Friday morning tosee the photos, posters, write-ups, picturesand presentation - and pay for their cookies!From them, and selling in school, P1B made£120 - and I kid you not just about every 5-year-old child in that class now knows aboutveins, arteries and how the heart works!It’s really well worth asking in your localschools if they’d consider adopting this as anEnterprise topic - schools like having a reallyworthwhile project, particularly if they canmention you in doing it, since a personalconnection always helps motivate the kids andparents. And you may find you enjoyed it andare as inspired by it as we were - honestly IIan on theirwedding day and apicture of Fiona with herbouquet, quietly remembering Jess.Philip and Julie Thomas (pictured below left)also celebrated their wedding earlier this yearand decided to ask their guests to offerdonations to Little Hearts Matter in lieu ofwedding gifts for themselves. They are friends ofAlison and Pete Turner whose son Charlie hasHLHS and they wanted to do this for them.Thanks to the generosity of their friends andfamily, we were presented with a fantastic£1,000.There have been a few people choosing touse their own special occasions to support LittleHearts Matter including grandfather to 1½ yearold Joseph Webb, Mr McLean at his 70thbirthday who raised over £600.We are really pleased and honoured toreceive donations in lieu of gifts and our thanksgo to you all for your kind support.was reduced to tears when I saw theirpresentation wall. One wee boy haddesigned a card with the slogan ‘Little HeartsMatter to me...’ I well up even now...Gill ClokeOlivia & Mrs Blackadderdecorating cookiesWe are proud to announce that the 2007Cookie Bake raised £14,000 with manyschools, clubs and groups all baking insupport of LHM.We hope 2008 will be bigger and better asthis year we have had two healthy cookierecipes developed especially for LHM sonow you can bake both healthy and sweetcookies and raise money at the same time!The new recipes are the chip ‘n’ beancookie and the orange squash shortie, bothwith great tasting ingredients including amystery vegetable in each.If you would like to take part in next year’sCookie Bake you can register now atinfo@lhm.org.uk13

Zipper ZoneHello to all young people, I hope you all hada brilliant Christmas and got everything youwished for!The time has come for me to write anotherpiece for the youth section of the newsletter,(Parents if you are reading this, please can youpass it on to your son or daughter so they canhave a read). We have had a furthersuccessful few months with our youth projectwork; the Education pack is coming along andit is nearly written, the DVD to accompany ithas been filmed and the editing is taking place.The Open Day in November at BretbyConference Centre was a great success,everyone had a terrific time doing the activitiesand taking part in the puppet show. The focuswas on Education and we had some of youshare your school experiences on camera,which we were very grateful for. If anyone elsewould be happy to write to me and tell me howsupportive or unsupportive your school hasbeen and if your heart condition affects yourprogress, then I would be really interested tohear your stories. My email address iskassie@lhm.org.uk.The On your Marks for Little Hearts Race inStaffordshire last November raised a lot ofmoney for the charity which was very muchappreciated. Thank you to all of you who tookpart, especially those of you in fancy dress - theoutfits were very funny.In the Summer we will be running anotherActivity Weekend and I am starting to planactivities for it, so if there is anything inparticular you would like to do, drop me anemail and I will see what I can organise!!Look forward to seeing you all soon,Kassie.VWALL OF PHOTOSFrom Left to Right:Daniel Smith (11),Matthew Luck (16),Bailey Smith (9) andJames Metcalfe (11)at the LHM OpenDay.Carys Allen (11)proudly showing hermedal for running thefun run for ‘On YourMarks for Little Hearts’.VBen and the Diana Award14Following the sad death of Princess Diana a specialaward scheme was created to reward children whohave demonstrated special qualities of caring. It mightbe work in eradicating bullying, support for charities orworking with someone in need.Our very own Ben Hall has just been presented withthe Diana Award.Whenever Ben is with younger children who have,like himself, been born with single ventricle heartdisease he immediately offers his caring support. Theyounger children look up to him as a happy, caring, andfull of life young man.Ben also helped his family and friends through thedevastating loss of his younger brother Freddy.Ben is the youngest recipient of this special award.Normally only children over the age of 12 are eligiblebut the Award committee were so taken by Ben'sthoughtfulness that they honoured him at the age often.Well Done Ben.As we are currently in the beginning stages of designing our new YouthWebsite we are looking for you to draw some pieces for our GraffitiWall. Between now and the end of February the design team and I wouldlike you to email me (kassie@lhm.org.uk) as many graffiti pieces as youlike that are relevant in some way to Little Hearts Matter.(You can use the programme 'Paint' on your computer and email me yourdesign as an attachment or if you are a tech head and know of any othersoftware you can use to produce your Graffiti, feel free to use that.)The winning design will be the first piece of Graffiti to go on the wall oncethe youth website goes live and the winner has the option to either receivea £20 Gift Voucher for HMV or if you have a particular interest inweb design or photography, and considered it as a career, then I canarrange for you to spend a day with our SGUD design team aswork experience.

VLittle Hearts Matter would not be able tooffer the support services that it hascreated if the charity didn't have a largenumber of volunteers.They man the support line out of officehours. They run the regional networks.They help to write all of the information thatthe charity produces and they help initiatemany fundraising activities. It is alsoimportant to remember that all of thecharity's Trustees are volunteers and theygive huge amounts of time to the work ofthe charity.Volunteering is hard work but the LHMteam, as well as getting involved withorganisation and support, also have anopportunity to meet up with other LHMmembers and have gained a huge amountof support from each other.We are looking for new Volunteers.!!!2008VolunteerAppealCould you answer the telephone to adistressed parent?Could you support someone throughthe decision making needed with anantenatal diagnosis?Are you an organiser who would liketo become involved in arrangingregional network events?We have organised a weekend where youcould find out if you have what it takesto be a volunteer.1st & 2nd March 2008If you are interested in exploring becomingmore involved just give us a ring and we willbook you into the weekend’s activities. Allyour expenses will be paid by the charity.If you would like an opportunity tochat the role of a volunteer throughwith the team just give us a ring on0121 455 8982.NoticeboardCinema Exhibitors Association Card - Application FormWe have enclosed with this copy of the newsletter an application form for the above card. This is anational card that verifies that the holder is entitled to one free ticket for a person accompanying them tothe cinema. A processing fee of £5.50 is charged per card and it is valid for three years. For moreinformation or to download a form you can visit their website, it also lists all the participating cinemas.Bethan - A year in the life of the baby with half a heart.Bryan and Mandy Edwards, one of LHM’s families have written a book about their daughter Beth’s firstyear. If anyone is interested in seeing a copy you can visit her website www.bethan.org.uk. Part of theproceeds will be donated to Birmingham Children’s Hospital and Edward’s Trust or alternatively you canchoose Little Hearts Matter in the optional instructions box.Something the Lord Made -Starring Alan Rickman and Mos DefReviewed by Paul HooksWhen my father-in-law found this film Ithought he had found a documentaryon the history of the BT shunthowever, it is in fact a film drama.That said, it does try and be true to thehistory even if the focus is very muchon the relationship between VivianThomas and Alfred Blalock.This does mean that Helen Taussig's role, (the'T' in BT Shunt) gets somewhat overlooked andthe film focus leaves you feeling that the shuntshould have been named after Blalock andThomas rather than Taussig. My researchsuggests Taussig came up with the idea, Blalockthought and planned the actual procedure andThomas was heavily involved in the animalexperiments.Anyway onto the film….It starts in the 1930s with Vivian Thomas losing hisjob in Nashville. Although he is a carpenter hehas a high school diploma and is working so hecan pay his way through college. He gets himselfa job as a janitor at Vanderbilt University Hospitalwhich is where he meets Dr Blalock. Blalock soonrecognises his talents and starts using him as aresearch assistant where they work on the natureand treatment of hemorrhagic and traumaticshock. At this point the only controversial elementof the story is that the research is carried out ondogs although this is not mentioned as an issueduring the film. One of the experiments theyconducted was where the left subclavian arterywas joined to the left pulmonary artery. This failed,however, years later Blalock was to return to theidea. In 1941 they successfully proved that theshock was caused by the loss of blood and otherfluids, this was a big breakthrough and resulted inBlalock being offered the post of Surgeon in chiefand professor and director of the department.VVAt this point Blalock and Thomashave a very close working relationshipand Blalock takes Thomas with him andyou start to see the racial issues unfold.They had segregated buses; Thomaswas not even allowed to enter throughthe front doors of the hospital.At St John Hopkins Hospital Blalockwas introduced to Dr Taussig who hasbeen working with Blue Babies for anumber of years. Taussig suggestedthe construction of a 'patent ductus' (open tube)may be the solution and they agreed to work onthis. It appears from the film that Thomas was theone who finally managed to replicate the conditionand then they adapted the idea they had linkingthe left subclavian artery to the left pulmonaryartery.On November 29th 1944 a small frail child waswheeled into an operating room at Hopkins for thefirst attempt to treat Tetralogy of Fallot. It was thefirst blue baby operation and came to be knownas the Blalock-Taussig Shunt. Unfortunately hedied several months later after a second operationhowever, two additional surgeries and theresulting physical changes proved it was a viableway to save lives and in years afterward, as we allknow, it has helped thousands of children.The outrageous element to this is it took 25years for Thomas to be credited publicly for hisrole in devising the blue baby surgery. In 1976 hewas awarded an honorary doctorate and hisportrait hangs in the lobby of the Blalock Buildingat The John Hopkins Hospital across from theimage of Alfred Blalock.Something the Lord Made (film) via Amazon£3.50 plus P&PAlso available:Partners of the Heart $29.98 (www.pbs.org)Amazon.com $25 (narrated by MorganFreeman)Partners of the Heart book £10.5015

Over to you...Little Hearts Matter,11 Greenfield Crescent, Edgbaston, Birmingham, B15 3AU, telephone: 0121 455 8982; email: info@lhm.org.uk; www.lhm.org.ukELLA WOODCOCKDawn, Ella’s mummy understandably couldn’tchoose which special photo to use for thenewsletter, and neither could we, so we thoughtwe’d feature a few of Ella’s achievements.This page is just for you – the members of LHM. We want you to tell us whatyou’ve been up to! Send us your pictures or stories – achievements, thingsthat have made you proud – however big or small. If your child has swum alength of the baths, conquered the bouncy castle, or gone off to their firstday at school or nursery, we want to know about it! We also want to includeany of your ideas to make life easier or recipes for foods to tempt thechildren! This is YOUR page – if there’s something you’d like to see – let usknow. Email your pictures, stories, recipes and ideas to info@lhm.org.ukElla with big sister Chloe at home for her firstChristmas, after coming home for the first timeafter her stage 2 surgery, two days beforeChristmas.“Ella’s first sports day atSchool, she was able totake part in all the races,with a staff memberalongside her and at herown pace”.• ABOVE: Olivia Rhodes (3) and Michael Smith (3) meetup earlier in the year.• LEFT & BELOW: Charlie Turner as Joseph in hisschool nativity and celebrating his 4th birthday dressedas ‘Donkey’ from ‘Shrek’“Ella decided shewould dress up forHalloween this year,just like her sister, soshe chose this lovelyoutfit and even did ashort stint ‘trick ortreating’”.16“To see Ella smile and play in the rivers, climb onthe rocks during our summer holiday this year inthe Yorkshire Dales was a real achievement”.World's Easiest Cheese Sauce Recipe!!!NO LUMPS (guaranteed).1. Melt a knob of butter in the pan.2. Add a couple of large spoonfuls of Philadelphia or other soft cream cheese (fullfat version), stir it until it starts to melt;3. Add a little milk and it'll just smooth right out into a sauce Then add yourcheese, to taste.You can also add ketchup to this, to make 'pink sauce' - always a hit in my family!Particularly good with tuna, and sweetcorn - and also good as a way to sneakily geta few finely chopped veg down...!Gill Cloke