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ISSUE 2 2015 NSW ACT nsw Tiny Tickers Ball Page 4 Big Steps for Little Hearts Page 6 Hearts Local Page 8 Find Us On Facebook heartkids_nsw www.heartkidsnsw.org.au Chief Executive Officer David Rose dave.rose heartkids.org.au 0408 501 931 Head of Family Support Lara Bostock lara.bostock heartkids.org.au 0431 153 444 Operations Manager Dawn Everingham dawn.everingham heartkids.org.au (02) 9631 2600 Event and Fundraising Manager Bianca Ciccia bianca.ciccia heartkids.org.au 0404 113 049 Community Fundraising Manager Leigh Henderson leigh.henderson heartkids.org.au 0432 071 843 Accountant Michelle Strawbridge michelle.strawbridge heartkids.org.au Administration & Special Projects Coordinator Lisa Chamberlin lisa.chamberlin heartkids.org.au (02) 9631 2600 Family Support Coordinator (Randwick & Westmead) Kim Mackie kim.mackie heartkids.org.au Support Ph 0406 424 627 Family Support Coordinator (Randwick & Westmead) Jenny Azzopardi jenny.azzopardi heartkids.org.au Support Ph 0406 424 627 Family Support Coordinator (Randwick & Westmead) Erin Kennedy erin.kennedy heartkids.org.au Support Ph 0406 424 627 Regional Coordinator Allison Baker allison.baker heartkids.org.au 0421 332 968 Regional Officer Central West Mardi Aplin mardi.aplin heartkids.org.au 0416 112 885 Regional Officer ACT Sarah Henderson-Smith sarah.henderson-smith heartkids.org.au 02 6242 7551 BOARD 2015 Chairperson Jackie Giles Vice Chairman Kevin Baker Secretary Joe Murphy Treasurer Jamon Thomas Public Officer HR Advisor Erron Palmer Directors Stephen Snowden Karen Graham Jayne Blake REGIONAL REPRESENTATIVES Mid South West Sydney Representative Kim Phillips kimandharry bigpond.com.au 0433 992 092 North and Upper Sydney Representative Vanessa Erickson mrsvanessae gmail.com 0407 064 262 Mid North Coast Representative Yvette Coulon yvette.coulon live.com.au 0418 356 240 Northern Rivers Representative Melissa & Jeremy Fisher m.j.fisher bigpond.com 0431 376 296 Hills District Representative Daniela Gerlach drgerlach optusnet.com.au 0409 912 496 Inner West West Sydney Representative Jess McIntyre jess.mcintyre24 hotmail.com l 0432 591 491 2 HeartKids Newsletter Issue 2 CEO David Rose A Message from the CEO Update October 2015 This quarter we are delighted to announce that our new hours and support location within the Children s Hospital Westmead have been confirmed and we have already been able to provide support to many existing and new members. Thank to all of our members who visited us in the Kids Korner Caf over the last 12 months see page 10 for the new details. There have been many terrific support events and activities recently in NSW and the ACT including the Big Steps for Little Hearts walk the Tiny Tickers and the Tiny Hearts Winter Balls. These three events in particular have brought together over a 1000 members of the HeartKids community whilst working towards a better future for our heart kids and their families. A particularly symbolic moment was the 21 seconds of silence and the lighting of candles for our heart angel families at the end of the walk whilst at the ball in Sydney we were proud to recognize 2 new life members and 1 new hall of fame member see page 7 for details. There is so much more ahead with the Orange Family Camp in November and Xmas Parties across NSW kicking off in Sydney on the 14th of November. 12 months of work culminated in Newcastle on the 14th September as we launched the HeartsLocal program (booklet dvd and financial assistance) with the express aim of breaking down the barriers and anxiety associated with travel to Sydney for surgery. We thank Newcastle Permanent Charitable Foundation who assisted with this project. As one wonderful project is completed we now commence the production of a resource for CaringHearts supporting our member families to receive counseling or psychological support whilst breaking down the barriers in accessing this support. As you know HeartKids relies heavily on our generous donors and fundraisers to ensure our programs continue. This quarter we thank all fundraisers but particularly the Cuppa hosts and our amazing City to Surf and Pub to Pub runners. If you would like to help over the coming months we encourage our supporters to participate in one or more of the wonderful fundraising opportunities including Sweet Heart Day in February or Super Boss in May both of which can be pushed through your local school. With the holiday season approaching we also encourage our members to keep their eye out for our Christmas campaign which directly supports families in hospital over this period. As I close this quarter its exciting that NSW are currently delivering a national conference for all state offices. By sharing collaborating and building a sense of one HeartKids across the whole country we aim to improve our service provision to you our members and to allow greater funding for life changing research Until next time.... warm regards David Rose on behalf of the team Chief Executive Officer Contents Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Back Cover HeartKids NSW Team CEO Update Tiny Tickers Ball HeartKids Heroes Big Steps for Little Hearts My Heart Hearts Local Family Support News & Events Family Support News & Events Continued Hannah s Story Heart Champions & HeartClass for Kids HeartKids Connect Heart Angels Our Supporters Diary Dates Editor David Rose Design Snap Printing Eastwood Contact Us HeartKids NSW PO Box 170 Westmead Hospital Westmead NSW 2145 www.heartkidsnsw.org.au (02) 9631 2600 HeartKids Newsletter Issue 2 3 Thank you to the following companies who have secured their sponsorship Gold What a spectacular night we had at this year s Tiny Tickers Ball. The energy was electric from the moment the doors opened with the impressive Bollywood backdrop and our very talented special guests from Captivate dance ensemble. Channel 7 s Simon Reeve our MC took the reins in hosting this very special event on Saturday 29th August at the Westin Sydney for our prestigious annual event. With just under 450 guests on the evening we were proud to have some special VIP s to help with our very special cause. Thanks to Thomas & George Burgess (South Sydney Rabbitoh s) Michael Crocker (NRL Great) and Trent Maxwell (Maxi -Bondi Rescue) for coming along in support. Silver The guests were spoiled with some magical moments from our performers and some emotional realities of the journey our families experience with their precious heart kids. The night would not be possible without the hard working efforts of the HeartKids NSW staff and the amazing volunteers who support the event by setting up and hosting tables on the evening. We are proud to announce that we raised just under 100 000 on the evening with the help of some very giving hearts. Check out the images of the night here Check out the Sharebooth images here Thank you from the bottom of our hearts... 4 HeartKids Newsletter Issue 2 HeartKids Heroes Doing it for HeartKids On Sunday 9th August over 30 HeartKids Hero s took on the iconic City2Surf and walked or ran from Sydney s Hyde Park to the beautiful Bondi Beach all for our precious heart kids. Together our team raised over 23 000. This amazing fundraising will help us support even more families and children living with CHD. We are sending a big thank you to everyone who got involved this year no matter how fast you ran or how much you raised. The difference you have made is huge We will be partnering with the City2Surf again in 2016 and are looking to have an even bigger year so keep an eye on our website to register for Australia s most loved fun run and do it for HeartKids We also had a fantastic team participate in the Pub2Pub in Sydney s Northern Beaches on August 23rd. Thank you to our families who took part in this great walk and for raising over 2000 for HeartKids. There are plenty of events throughout the year you can get involved with just check out our events calendar on our website. Thanks to Southern Power Football Club Southern Power AFL Club held a fundraising dinner for HeartKids NSW on August 13th at Club Kirrawee raising over 4000 for HeartKids. The teams players and its community are so supportive of HeartKids and were very generous on the night with plenty of bids on the silent auction items. We were also able to invite four of our Sutherland Shire heart families to enjoy a night off Thanks so much to Southern Power we look forward to next year HeartKids Newsletter Issue 2 5 Big Steps for Little Hearts On Sunday 11th October over 300 heart families heart kids and HeartKids supporters came together to take some Big Steps for Little Hearts at our very special 2.1km walk in Parramatta Newcastle Orange and Canberra. Families who came walked with a coloured balloon to signify their special connection with HeartKids. Blue for heart kids red for anyone walking in support of a heart kid and white for those walking in memory of a heart angel. It was a wonderful image seeing so many people come out with balloons in support of our heart kids. The significance of 2.1km is due to the human heart beginning to beat at 21 days after conception. Our course is 2.1km long as a simple reminder that we all have a heart beating inside us capable of so much we just need to take the first step. We kept this connection through a 21 second silence in memory of our heart angels following the walk. Candles were also lit and in some venues the white balloons released to further honour our heart angels. There was a fantastic team of volunteers who helped ensure the day ran smoothly for all our heart families as well as running the BBQ for everyone to enjoy. There were some great stories run in local papers around the state bringing light to our walk and Childhood Heart Disease all while featuring a local heart family attending the walk. We were lucky enough to have on board Kennards Hire as a State Sponsor and can t thank them enough for their fantastic contribution. So many of our fantastic attendees also created online fundraising pages and asked their friends families and colleagues to sponsor them with a donation for the walk. The response was absolutley amazing with our highest fundraiser raising over 7000. Together across the state our families raised over 40 000 for HeartKids an effort we are so grateful for. Along with registrations and sponsorship we are proud to announce that the total amount raised from Big Steps for Little Hearts is over 51 000. The difference this will make in the lives of the children and their families that HeartKids supports is huge. Thank you to everyone who attended our event. It was fantastic to bring everyone together. See you next year 6 HeartKids Newsletter Issue 2 Australia Launch My Heart The Children s Hospital Westmead Please take the time to visit MyHeart our new site for young people living with a heart condition. MyHeart www.myheart.org.au explores a range of topics relevant to people aged 13 to 22 and also has some really useful resources for their parents. At all times MyHeart gives specific consideration to how a heart condition may impact many of the topics relevant to young people including travel relationships and body image and many more. Where we ve covered issues of a medical nature we ve worked with experts to ensure accuracy MyHeart also has The Beat which features key articles by selected writers and a forum where young people can chat online. Aside from all that there is loads of information you just won t want to miss. The MyHeart key messages for your future reference are o MyHeart is for people aged 13 to 22 who live with a heart condition o MyHeart is at www.myheart.org.au o MyHeart is a place to chat learn grow and get the facts on living with a heart condition. HeartKids Hall of Fame and Life Members HeartKids NSW are delighted to announce the recipients of this year s Hall of Fame and two Life Member Awards Hall Of Fame Con Dede as our second Hall of Fame member as well as being a wonderful friend being a terrific advocate has made a long term financial commitment to HeartKids. including major auction prize contributions at the Tiny Tickers Ball a restaurant group wide campaign called Heart Felt desserts putting his body on the line and raising awareness and funds for HeartKids walking 100km and many other donations and sponsorships throughout his association. Con joins our inaguaral Hall of Fame member Peter Knox. In 2014 we recongnised Dr Dom Frawley as our inagural Life Member. When awarding these significant awards our organisation s most significant we look at three criteria a symbolic figure representing our values long volunteer contribution and influential and impactful contribution to our organisation (i.e. positively changing the course of HeartKids) Our second Life Member Ryan Payne during his time with HeartKids went above and beyond on each of these criteria. Ryan held the chairman s role during a very turbulent time in our organisation s history and due to circumstances was required to take an active operational role. It is likely had Ryan not stepped up his efforts that we would not be on our current growth trajectory. Our third Life Member Jayne Blake has done much to build on the strong foundations established by Dom Ryan and their peers. Jayne has chaired both the state and national HeartKids organisations has been the driving force behind NSW support and financial growth overseeing a doubling of revenue tripling of staff and importantly increasing the support and research provisions leading to our current stability. HeartKids Newsletter Issue 2 7 HeartsLocal Launched N a t io n a l P a r t n e r s HeartsLocal through a resource booklet and DVD shines the light on services available for regional families travelling to Sydney for treatment and aims to reduce the feelings of social isolation that can occur when being away from home. This program strives to reduce some of the associated anxiety and provide answers to practical questions during a time when everything can seem uncertain. How you can support HeartKids in 2016 Wear a Splash of Red With the generous support of Newcastle Permanent Charitable Foundation Sweetheart Day for the HeartsLocal resource covers just about everything you need to takeon Friday 12th February into consideration when planning your trip from what to pack to emotionally preparing your children right down to where to park when you arrive at the Dob in your principal or C a le n d a r D a t e s hospital. You will find family stories as well as tips and advice from heartteacher to dress as a S e p t e m b e r families who have walked the path before you.H u g a B e a r P ic n ic Superhero in May 2016 2 1 We hope families find comfort in these wordscasbtheyaembark bon o n f ir m e d ) the journey O t o e r ( d d s d a y t o e c ahead furthermore that we raise awareness 1thatn help is out there and that 1 T e e D a y families keep at the forefront of their mind thatethey sareWnotg b y C u p O r a n g ethat P a g e 1 2 f o r d e t a ils 2 5 H a r t K id N S R u alone and S e e HeartKids is here to help. 2 6 G r a n d p a r e n t s H ig h T e a Dave Rose (CEO 2 7 A C T P ic n ic S e e P a g e 1 2 f o r d e t a ils How you can support HeartKids in 2016 HeartKids NSW) Kevin Baker Take some Big Steps forBaker (Newcastle(HeartKids NSW Board Member) Allison Wear ahold a Lachlan Red launch of Splash of at the Regional Representative and Little Hearts andheart kid HeartsLocalfor in Newcastle. charity walk Sweetheart Day in 2016 on Friday 12th February How you can support How you can support HeartKids in 2016 HeartKids in 2016 How you can support HeartKids in 2016 Wear a Splash of Red Wear a Splash of Red for Sweetheart Day Dob in your principal or for Sweetheart Day on Friday 12th February teacher to dress as a on Friday 12th February Superhero in May 2016 Dob in your principal or teacher to dress as a Superhero in May 2016 Wear a Splash of Red for Sweetheart Day on Friday 12th February Dob in your principal or teacher to Be a HeartKids Hero dress as a Superhero & hold any kind of in May 2016 event any time Take some Big Steps for Little Hearts and hold a charity walk in 2016 Dob in your principal or Be a HeartKids Hero & hold any kind of teacher to dress as a event any time Take some Big Steps for Superhero in so we would love your help in spreading the word about HeartKids and the work we do to support May 2016 Hearts and hold a Little Do you have a child in school If charity children born with Childhood Heart Disease and their families. walk in 2016 Take some Big Steps for Little Hearts and hold a Valentine s Day is International Congenital Heart Disease Awareness Day and we would love all NSW schools to help us mend some charity walk in 2016 broken hearts. Be a HeartKids Hero & hold any kind of event any time HeartKids Newsletter Issue 2 Be a HeartKids Hero 8 Take some Big Steps for PlayGroup Playgroup is an informal session where mums dads grandparents care-givers children and babies meet up in a relaxed and friendly environment. The adults stay to interact with other adults and most importantly the kids get to have some fun The kids have jumped and played the day away at Castle Hill Indoor Play Centre visited Baulkham Hills Fire Station including dressing up with the firemen s helmets taking turns using the fire hose and exploring the fire truck. A highlight of the term was an excursion to Nancy s Freedom Farm to help farmer Nancy collect the chicken eggs around her farm. We spent the day exploring the farm feeding the goats collecting the eggs and nursing the new baby chicks. We will be returning to Nancy s farm again in November when the farm is bustling with baby animals which is sure to create some big beautiful smiles on the children s faces. Keep a look out for our new term 4 playgroup calendar and if you would like anymore information please email Erin Kennedy or contact the office. HeartKids back in the Hospital HeartKids NSW is delighted to announce that our Family Support Coordinators will now deliver services in both The Children s Hospital Westmead and Sydney Children s Hospital Randwick. From the 23rd September our FSCs will be working from outside the Parent Carer Resource Centre located on the 1st floor at Westmead Children s Hospital Monday to Thursday 12.30-2.30pm. We will also resume support services at Sydney Children s and this initially will be on a needs basis. Please remember to contact the support team if you are coming into hospital so we can offer our support during your time of need. Heart Dads Event on Sydney Tall Ships 2015 Sydney turned on a spectacular sunny warm day for our recent Dads event. Ten Heart Dads and a mate each enjoyed a 2 hour harbour cruise on the historical Sydney Tall Ships. The afternoon included a buffet lunch open bar and for those brave Dads a mast climb. All while enjoying the sights our beautiful Sydney Harbour has to offer. HeartKids NSW looks forward to our next Dads Event in 2016. A big thankyou to the Parker Family who assisted us by being our representative for the day. HeartKids Newsletter Issue 2 9 Family Support News & Events Family Support Team Since our last newsletter the Support Tea m have remained busy assisting families coming to see us at the Kidz Korner Caf . Over the last couple of months the team have been touched by a number of our families who have spent many months in hospital with their heart kids. A majority of these heart kids are newborns. We a pleased to report that these little ones have finally made it home and are doing well with regular check-ups. They are a true testament to the expert care and attention they receive from the team at The Children s Hospital at Westmead. For all our heart kids who remain in hospital we send positive thoughts as you continue to recover. We look forward to a busy few months ahead catching up with families at some of our exciting events. Please refer to the Calendar of Events on the back cover and also our website. Contacting HeartKids for Support HeartKids NSW are making it simpler to contact our support team To speak to a Family Support Coordinator you can either call the office 02 9631 2600 or call text the support team mobile 0406 424 627. Jenny continues to take expressions of interest on bike events. If your heart kid or sibling would like a bike please register your interest with Jenny at jenny.azzopardi heartkids.org.au Remember if you are coming to The Children s Hospital at Westmead please let us know so that we can catch up with you and help out with support vouchers and a carebag. Kim Jenny and Erin are very excited to be once again supporting our families within the hospital making it easier for our families. We look forward to the warmth of Spring and catching up with all our families from hospital to home. Take Care Kim Jenny and Erin Member Update To all our heart kids and their families who are or who have been in hospital recently having surgery procedures or have been unwell HeartKids wish you all a speedy recovery and hope you are home very soon. Also to all our heart kids who have started preschool big school high school begun sporting events or other actvities had a special birthday or occasion we say Congratulations and Well done. If your heart kid has had a celebration or you would like to share a special achievement with our community please send a photo and or short paragraph to mail heartkidsnsw.org.au and we will try and include it in our next issue. New Member Welcome HeartKids NSW would like to welcome the following families to our family Dalton De Aboitiz Guevara Hansen Henry Little Matthews Mizzi Monforte Nady Schweinsberg Zhou. Bike Give-aways Our friends at Corporate Challenge Events have invited HeartKids along to their events. At these events our heart kids and their siblings receive a bike and helmet. During May 2015 11 heart kids and their siblings received a bike at locations in Sydney and Coogee. Many thanks to Grant Thornton and Robert Half who donated the bikes through Corporate Challenge Events. If you would like your heart kid and their siblings from ages 2-12 years to receive a bike then register your interest by contacting Jenny Azzopardi and Jenny will place you on a wait list. Your children must be in need of a bike or have outgrown an existing bike. You must be able to attend the presentation to receive the bike s. The bike give away venues are situated in various locations across Sydney. However if you are a regional family and would like to receive a bike then please let Jenny know. 10 HeartKids Newsletter Issue 2 Hannah s Story Hannah was 9 days old when she was first admitted to Westmead Children s Hospital and the possibility that she had CHD was first mentioned. Hannah s condition was quiet complex. She was also diagnosed with liver and kidney problems at birth. During our 1st Eco her VSD was picked up and during monitoring her SVT was found. we did at home. Mostly for monitoring breathing and feeding issues. She has had two heart operations to insert a Loop Reveal Recorder and 11 other operations. Her condition is now managed by medication and we are still waiting and watching her VSD which doesn t seem to be causing her too much trouble. I wanted to do more to help families so 2 years ago I joined the HeartKids team as a Family Support Coordinator. I now support other families going through the same journey we are on and I also run the HeartKids Playgroup. I absolutely love my job. I ve meet the most amazing kids and the families that cherish them. But most of all through HeartKids we have found we are not alone which I think is so important for Hannah as she gets older and she has made so many beautiful heart friends her age through family camp and all of the social events we attend. We were quiet shocked and scared. Hannah had problems from the moment she was born. She had trouble holding her temperature and feeding. Hannah was my second child and I could tell there was something not quite right about her. She was grey looking very lethargic she had trouble staying awake while I was feeding her and she would sweat even though it was cool. It seemed for the first couple of months they keep finding different problems and it took quite a while with a large team of specialist from all over the hospital to come together with a plan. We were quiet shocked and scared. I had heard of CHD but the reality of it and the effect it has on children didn t fully sink in until our second day on Edgar Stephens ward. We were surrounded by so many babies and kids who had had open heart surgery and at the time we still didn t have a clear diagnosis which was scary. Everyone around us seemed to have had their heart issues picked up during their 20 week scans. Hannah was hospitalised on and off for the first eighteen months of her life. We spent more time in hospital then sit crawl and walk through months and months of physiotherapy occupational therapy and hydrotherapy. Hannah is still little compared to her friends and we still have our ups and downs with her health and she gets tired easily and collapses when her heart goes into an arrhythmia but she will give anything her friends can do a try. Hannah does Jazz Tap and Ballet 2 nights a week and she is part of her dance centers performing Troupe group which just competed for a place at nationals and won 1st place. Hannah also surprised us recently with her outstanding half yearly report and we are so proud of her. HeartKids have been an amazing support to us while we were in hospital and now beyond. Having the support of the family Support Coordinators was very reassuring and comforting. They were always a welcome distraction to the day. HeartKids have been an amazing support to us while we were in hospital and beyond. Hannah didn t have the strongest start to life but she has certainly made up for it now. Hannah is an incredibly strong little girl that loves to dance and will wear a tutu wherever she can but most of all she amazes us and everyone who knows her every day just to see how far she has come. As a baby reaching her important milestones was a challenge due to the amount of time she spent laying down in hospital. She had to be taught how to HeartKids Newsletter Issue 2 11 world of difference to a little heart in need The Heart Champions Regular Giving Program is a simple yet effective way to provide little as 2 a week can make a Heart Disease As lasting care and support to children with Childhood and the families who cherish them. By setting up a monthly charitable donation to HeartKids NSW you can support our vital work 365 days a year. Regular giving helps us plan ahead and ensures that we can continue to be there for the 1 in 100 children affected by CHD children like Zali (pictured). HeartKids NSW receives no government funding. Our ability care for families is entirely dependent on the generosity of caring individuals people like you. Your regular gifts will help fund a range of vital programs to help heart families cope with the many challenges that CHD presents including peer support financial support family camps and groundbreaking medical research. To sign on to the Heart Champions Regular Giving program simply visit https nswheartskidsdonationgateway.gofundraise.com.au or call (02) 9631 2600 Regular Giving HeartClass for Kids Having sadly lost a daughter to Childhood Heart Disease (CHD) Swans co-captain Jarrad McVeigh is passionate about championing HeartKids cause and promoting HeartClass for Kids a new initiative of HeartKids NSW. HeartClass for Kids is a web-based educational platform targeted to classmates of K-6 school-aged children living with Childhood Heart Disease. The interactive website follows the story of Henry HeartKids (pictured) who loves AFL naturally he barracks for the Swans - but is unable to play because of his condition. The playful lessons not only teach kids about their heart they also encourage classmates to brainstorm ways they can include and connect with their heart kid peer even when he or she is absent from school or unable to participate. Footy is great way for kids to develop important social skills such as cooperation and mateship Jarrad says but many kids with CHD are medically restricted from playing. HeartClass for Kids demonstrates that even if they re not actively on the field kids with CHD can still get involved in a meaningful way. It s absolutely vital that children with a heart condition grow up with a healthy self esteem adds Jarrad. I m really excited about being involved with this project as it has been designed to make sure that kids with CHD aren t forgotten on the sidelines and that their unique contribution is recognised and valued. For more information or to register for HeartClass for Kids please visit www.heartclassforkids.com.au Have you updated your current details with us Please send any amendments to mail heartkidsnsw.org.au so we can update our records. 12 HeartKids Newsletter Issue 2 HeartKids Connect Tiny Hearts Winter Ball Canberra A fantastic night was had by all at the Tiny Hearts Winter Ball Canberra on 8th August 2015. 240 guests came along for a fun filled night to support HeartKids NSW ACT. The Canberra Rex Hotel served up beautiful food while guests were wowed with entertainment from Nomad the Magician the beautiful Kokoloco latin dancers and In the Booth photos. Auctioneer Scott Jackson from Ray White Belconnen whipped the guests into a bidding frenzy for our live auction and MC Greg Bayliss from ABC 666 kept the evening moving smoothly. We even had a surprise video message from Prime Minister Tony Abbott wishing us well for the event. Overall it was a hugely Ronnie Tullipan successful evening raising over 47000 for HeartKids. Huge thanks to everyone who helped make our night so successful. Our sponsors Kennards Hire Ray White Belconnen Canberra Eye Laser Kings Hi-tec Oils and Audi Centre Canberra. Also thank you to our wonderful volunteers and our speakers who captivated the room with their heartfelt words. Heart Angel dad Ronnie Tullipan Dave French from Ride for HeartKids and 11 year old heart kid Thomas Henderson-Smith. Lastly a huge thank you to the tireless Ball committee Peta Crowder Suzy Brown Aniela Mundy Hong Nguyen and Elise Stade. The Henderson-Smiths Orange News Mardi Aplin along with local heart mum Danielle Wright accepted a cheque from Orange Ex Services Club to the sum of 2000 as part of the local ClubGrants community project. This grant will help us support families in the central West region of NSW. 120 000.00 was distributed to different groups and charities from this area and it is fantastic to see the club give back to the community. Mardi Aplin(Regional Officer HeartKids NSW) with Danielle Wright (Heart mum) HeartKids Newsletter Issue 2 13 Bereavement We are thinking of all families with Heart Angels who have had anniversaries recently. We wish to pass on our deepest sympathy to families our FSC team have supported in recent months with the loss of their precious children. Heart Angels Helping Yourself Grief is like a journey to an unknown destination that you cannot control or plan. Here are some suggestions for getting through the difficult times either privately and personally or with others. Remember though that you will grieve in your own way Privately and personally - You may sometimes prefer to keep your thoughts and feelings to yourself Try not to make big decisions too son Create a memorial - do or make something to honour the person who has died Continue the relationship with the person who has died by talking to them looking at photos visiting special places Develop your own rituals light a candle listen to special music make a special place to think Allow yourself to express your thoughts and feelings privately. Keep a journal draw collect photos Exercise - do something with your pent-up energy walk swim garden Draw on religious and spiritual beliefs if this is helpful Read about other people s experiences find books and articles Think about self-care ideas such as meditation massage or aromatherapy With other people - sharing with other people can reduce the sense of isolation and feelings of loneliness that comes with grief Allow people to help you - you will be able to help someone else at another time Talk to family and friends - sharing memories and feelings can be comforting Consider joining a support group Don t feel you must grieve all the time - try some things you enjoy as well when you feel up to it Talk to a counsellor to focus on your unique situation Extract taken from Now what Understanding grief (Australian Government Department of Health and Aging) NSW Brian Knapp who sadly passed away on 16th October. Brian and his wife Christine have been supporting HeartKids for the last 6 years holding Bunnings BBQ s and volunteering at various events. Christine also makes the Teddy bears that are given to the families in hospital. Brian & Christine first became involved with HeartKids after losing their granddaughter Jasmin to CHD. Rest in peace Brian you will be greatly missed. Brian Knapp It is with great sadness that we say farewell to a wonderful supporter of HeartKids Caring Hearts Program I just wanted to say thank you so much for contributing to my bereavement counselling. It really helped towards the costly bill and enabled me to continue seeing my counsellor until the 1st anniversary of my daughter s passing. Thank you HeartKids for providing such a fantastic and helpful service. It really meant the world to me. - Melanie Taylor mum to Heart Angel Alice Grace Taylor Feeling overwhelmed need someone to talk to As you know we have our amazing FSC staff but if you need professional support we have financial assistance to make this affordable for you. HeartKids understands that stress is common in daily life but exposure to prolonged stress can start to affect your mental and physical health. Whatever the cause there are simple steps that can help reduce or manage stress such as maintaining a healthy lifestyle including healthy eating regular exercise enough sleep and avoiding harmful levels of alcohol and other drugs. But sometimes additional help is required especially when faced with a diagnosis of CHD and if you think this might be necessary your GP is the best starting point. Our Caring Heart Support Program provides financial assistance for you to access professional support such as the Access to Psychological Services program (ATAPS) or Better Access to Mental Health program as recommended through your GP. It s more common than you think to take this extra step for support and when you do it s often surprising how beneficial it is. HeartKids is here to help you. Please visit our website for full details and to download the claim form www.heartkidsnsw.org.au 14 HeartKids Newsletter Issue 2 a c t Ma r d i A p lin P h o n e 0 4 1 6 1 1 2 8 8 5 o r . a p lin h e a r t k id s . o r g . a u f o r m o r e d e t a ils o n t h e s e e v e n t s . The Event Supporters C n C o n t a c t Ma r d i A p lin P h o n e 0 4 1 6 1 1 2 8 8 5 o otra c t Ma r d i A p lin P h o n e 0 4 1 6 1 m a r d i. a p lin h e a r t k id s . o r g . a u f o r m m a r d i. a p lin h e a r t k id s . o r g . a u f o r m o r e d e t a ils o n t h e s e e v e n t s . 1 3 HEARTKIDS WOULD LIKE TO THANK OUR SPONSORS & SUPPORTERS FOR THEIR GENEROUS CONTRIBUTIONS AND SUPPORT. P a g e 1 3 K id s N S W p r e s e n t s o u r in a u g u r a l H a ll o f F a m e a n d L if e Me m b e r d s e s e e s e p a r a t e e m a il f o r lin k t o p h o t o s a s t o o la r g e f o r t h is m e n t 1 5 P a g e 1 3 Eastwood H e a r t K id s N S W p r e s e n t s o u r in a u g A w a r d s s o r s ( P le a s e d is p la y lo g o s in t h is o r d e r ) H e a r t K id s N S W p r e s e n t s o u r in a u g The Major Prize Sponsors A w a r d s P le a s e s e e s e p a r a t e e m a il f o r lin k u r a l H a ll oou mF n tm e a n d L if e Me m b d c f e a P le a s e s e e s e p a r a t e e m a il f o r lin k t o p h o t S ps nao r s t(o le a s e rdg e lafyolo g t s in t o o s s P o la is p r o h is u m e n t doc P a g e 1 5 SPECIAL THANKS GOES TO... P a g e 1 5 S p o n s o r s ( P le a s e d is p la y lo g o s in t h is o r d e r ) The Event Supporters Eastwood N a t io n a l P a r t n e r s N a t io n a l P a r t n e r s The Major Prize Sponsors N a t io n a l P a r t n e r s N a t io n a l P a r t N e r s n a l P a r t n e r s n a t io io n a l P a r t n e r s N a t io n a l P a r t n e r s N a t io n a l P a r t n e r s Eastwood I TINY TICKERS BALL 2015 NATIONAL PARTNERS6 N a t ioN a t io a r tl P a s t n e r s n a l P n a n e r r N a t io n a l P a r t n e r s N a t io n a l P a r t n e r s Ca C a le n d a r D a t e s le n d a r D a t e s S e p t e m b e r e n d a r D a t e s S e p t e m b e r t e m b e r H u g a B e a r P ic n ic A C T P ic n ic S e e P a g e 1 2 f o r d e t a ils H n ic 2 1 H u g a B e a2r 1P ic u g a B e a r P ic n ic o b e r ( d a d s d a y t o b e c o n f ir m e d ) 6 I TINY TICKERS BALL 2015 C a le n d a r p t a me s D S e O ce t y e r d a c d y t o ) bt O c t o b e r ( d a d s tdoab e r o ( b e d so n fair m e d b e c o n f ir m e d ) S 1 pe ee m2a 1e H uT e e n BDeaa r P ic n ic 11 y 1 e T t n D by r g a 2 S A T g e 1 2 f e e P a 1 2 7 A C T P ic n ic 7 e eC P aP ic n ic S o r d e tgaeils 2 f o r d e t a ils C a le n d a r D a t e s T e e n D a y C a le n d a r D a t e s C e b a a r H e a r t K id s N S W R u g b S C ua leO Cea g n Saaer PD a e e s2 f o r d e t a ils y e p tp mnrd r leeDdet e s a g t 1 n INDIVIDUAL SUPPORTERS S e p t e m b e r C a le n d a r D a t e s S e p t e m b e r 2 5 H e a r t K2 7s SUPPORTERS S u p P r a 1 a S e a id N We P t b y N S e R u n g p f CORPORATE SCHOOL 2A5SCHTa aRr uicgKnidics nCSue W OPraa g bey e 1C2e ef oO rgdene gt e2 ilso re dPeatgaeils1 2 f o r d 2 1 H u g a B e r P ic ic d 2 G a 2 1 H u g a B e a r 6 icrn n d pO ce2n6tbGHa nh dTaerasn td aH igth Tb e c o n f ir m e d ) P ic a r t o s err ig ( p a de s y o e a G r a n d p a r e n t s H ig h T 2 a S H u gt e m b a r P ic n ic e 1 e p a B e e r Malcolm Andrews Jaclyn Phillips 2 7 A C T P ic n Millhaven Financial f o r d e t a ils ic S e e P a g e 1 2 Services C a le n d a r AlpinesNurseries D a t e 2 7 2A C T u ic aicB e 1 H P 1 f o r d t a ils g e 1 2 n oD a d e t a Permanent f r y Emily Armstrongg nH u Seeaar PPaegaer icP2ClaireeRobertson AOGF BenevityP ic n ic S e e P a 1 1 T e eNewcastle ils 21 g B ic n ic n ic 2 7 A C T O c t o b e r ( d aOrange Ex t o b e cClub ir m e d ) d s d a y Services o n f O c t o b e r ( d a d s d a y t o b e c o n f ir m e d ) Lucy Boulos A C T P ic n ic S e e P a Tony2Sammut a ils Batphone r id s N S W 2 7 2 7 A C T P ic n ic S e e P a g e o1 2d e t r d e t a ils S e p t e m b e r g e 1 f r f o O c t o b e r ( a d s d a y 2 5 H e ao t K ir m e d ) R u g b y C u p O r a n g e S e e P a g e 1 2 nf Ross Buckingham y Renate Schiller Chargrill Charlies dLane Cove t o b e c Penrith Gaels Club 1 1 T e e n D a Canham b ecrt o (bdeard s( ddaadys t dAshleigh efSchweinsberg 2 1 H u g a Collarenebri Mulga Mudlarks e 2 6 DGar yPortaCity tBowling TClub t c ) e OHcetaor OK id s N S W R u g b y Couapby e Oor aobng eir cmeeed f ira m e d1)2 f o r d e t a ils B e a1r1 PT eneic D a y 1 1 T e n a n d p r e n s H ig h e a ic o n Susie 2 5 n t n S P g Michelle Carroll e n TD aeyn D a y Daryl & Kay Sidman Cooks Hill Social Club Primbee Public School 1 1 T e 1 e 1 p a r e n t s H ig h T e a a ge e P 2 7 A C T P ic n ic 5S e e aP t K id s12 5 f o re a g tbK id s p SO r a n g e b e e CP ap e O r2 n o r dS e a ils a g e 1 2 H d r a C u N W R u g S y u 6 G r a d 2 He et Ralph &2HelennClifton Allison Stephen Dedes Group r a g e N S W R u e t y ilsQuota International ofg 1 f S s R S g b y u b y O u C p C r ge 1 r 2 5 H e a5r tHKeid sr t N idW N uJasonguStuartapn gOer aS nege eP Sa e e P a2g feo 1 2d eftoarils eAquatic Centre6 G r a n d p a r Gloucester h T e a a K W R d Marie Edwards 2 Galston t a ils 2 O c t o b e r ( d a d s d a a n t o ab e nc o n fig h T d a e n t s H ig 2 6 G r y d p r e t s H ir m e e ) Alanna EvansG r a6n d pra rnednpta r e n t hTonyhThomas Gregory Jewellers Ritchies 2 6 2 G a s H ig s H e a T e a T ig Therese Finnegan D a t e s Maryanne Voyazis Harry s Warners Bay Newsagency C a leC a lern d a r D a t e s nda 1 1 T e e n D a y Caf de Wheels Chris Holman Greg Watson Liverpool Wenty Leagues Club 2 5 H e a r t K id s N S W R u g b y C u p O r a n g e Westfield Hornsby f o r d e t a ils S e e P a g e 1 2 Sue Kearns WA Webb IMB S e p tSee p t e m Melissa Little m b e r b e r Ben Wen IPG Foundation Woolworths 2 6 G r a n d Katoomba H ig h T e a p a r e n t s RSL June Longmuir Shandelle Whitty Raelene McLenaghan Marian & EH Flack Trust 2 1 H u g a B e a r P ic n ic 2 1 H u g a B e a r P ic n ic 2 7 A C T P ic n ic S e e P a g e 1 2 f o r d e t a ils 2 7 A C T P ic n ic S e e P a g e 1 2 f o r d e t a ils HeartKids Newsletter Issue 2 15 Calendar of Events Full details are on our website under What s on tab November 14 21 Sydney Christmas Party Newcastle Christmas party February 2016 Sweetheart Month Lots of exciting things happening please check our website 27-28 March 2016 19 Newcastle Tiny Hearts Trivia Night First Aid Training April 2016 1-3 Family Camp For more details or to register your interest about any of the above events please call the office (02) 9631 2600 or email mail heartkidsnsw.org.au WHO WE ARE We are a children s charity who are concerned with the care of children born with or who acquire childhood heart disease (CHD). VISION We aspire to life unaffected by Childhood Heart Disease. MISSION To improve the lives and futures of those affected by Childhood Heart Disease by providing high quality caring support information and advocacy and to give hope by driving world class research. OUR CHARTER Are you interested in joining a HeartKids playgroup We are currently looking at expanding our regular playgroup exclusive to parents of children with CHD. If you are interested in joining this group please email mail heartkidsnsw.org.au with your details and we will be in touch.