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ISSUE 2 2014 NSW ACT nsw Tiny Tickers Ball Page 4 HeartKids Escapes Program Page 6 Olivia s Story Page 10 Find Us On Facebook heartkids_nsw www.heartkidsnsw.org.au Chief Executive Officer David Rose dave.rose heartkids.org.au 0408 501 931 Operations Manager Dawn Everingham dawn.everingham heartkids.org.au 0420 364 125 Event and Fundraising Manager Bianca Ciccia bianca.ciccia heartkids.org.au 0404 113 049 Donor Relations Manager Natalea Litchfield natalea.litchfield heartkids.org.au 0423 737 654 Community Fundraising Coordinator Alisa McDonald alisa.mcdonald heartkids.org.au 0401 963 632 Accountant Michelle Strawbridge michelle.strawbridge heartkids.org.au Administration & Special Projects Coordinator Lisa Chamberlin lisa.chamberlin heartkids.org.au 0406 424 511 Family Support Coordinator (Randwick & Westmead) Kim Mackie kim.mackie heartkids.org.au 0406 424 627 or 02 9294 0800 Family Support Coordinator (Randwick & Westmead) Jenny Azzopardi jenny.azzopardi heartkids.org.au 0406 424 620 Family Support Coordinator (Randwick & Westmead) Erin Kennedy erin.kennedy heartkids.org.au 0406 720 575 Regional Coordinator Allison Burgess allison.burgess 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 2014 Chairperson Jayne Blake Vice Chairman Kevin Baker Secretary Joe Murphy Treasurer Jackie Giles Public Officer HR Advisor Erron Palmer Directors Jamon Thomas Brad Van Wely Stephen Snowden Karen Graham REGIONAL REPRESENTATIVES Central Coast Representative Kristy Hughes akchughes gmail.com 0426 841 234 Mid South West Sydney Representative Kim Phillips kimandharry bigpond.com.au 0433 992 092 Hornsby Wahroonga Representative Vanessa Erickson mrsvanessa gmail.com 0407 064 2622 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 Taree Manning Representative Tracey Crutcher tr2430 virginbroadband.com.au 0403 938 540 Hills District Representative Daniela Gerlach drgerlach optusnet.com.au 0409 912 496 Wollongong Representative Sharon & Michael Rooke Sharon 0412 642 783 Michael 0418 484 765 smrooke netspace.net.au Wagga Representative Jess McIntyre jess.mcintyre24 hotmail.com 0432 591 491 Riverina Representative Jess McIntyre jess.mcintyre24 hotmail.com 0432 591 491 2 HeartKids Newsletter Issue 2 CEO David Rose A Message from the CEO Update October 2014 This quarter we celebrate the success of the Tiny Tickers Ball encourage participation in the Cuppa for HeartKids campaign share with you some big commitments to our family support and research programs and announce our first Hall of Fame and Life Members. But first as per my recent note to all members we are sorry we have been unable to actually be in the hospital to provide you with a shoulder to lean on someone to talk to or any financial assistance since Tuesday 10th July and have instead been doing this from Kids Korner cafe. We have provided a detailed update via our website and encourage you to read this if you haven t done so already. And of course welcome emails of support to mail heartkidsnsw. org.au In recent months HeartKids has mapped out our Family support priorities and then tested this with our members through our annual member engagement day. Three of these commitments are (i) Escapes Program a second annual family camp will be added to our calendar focused on our regional families providing a fully funded weekend escape for up to 50 families providing a much needed escape from the day to day realities of CHD (ii) soon we will take the first steps in employing a full time Head of our Family Support Program who will oversee the expansion plans we have underway allowing us to deliver even more support to our members in a more strategic way and (iii) we have doubled our commitment to research and hospital support this year up to 100K highlighted by our recently donation to the world class Grants in Aid program that funds local researchers and clinicians with ground breaking cardiac research projects. At the Tiny Tickers Ball we made two significant organizational awards. The first of their type for our organisation. The first award honoured and inducted Peter and Kay Knox into the HeartKids Hall of Fame for their long-term financial commitment to HeartKids NSW through being gold sponsors and significant auction prize contributors of the Tiny Tickers Ball and for hosting a fundraiser that has raised over 100K for HeartKids. The secondly award our first Life Membership was presented to Dom Frawley who clearly demonstrates our values he has had a long volunteer contribution and has made an influential and impactful contribution to our organization positively changing the course of HeartKids. (See page 13 for photos) As I close this quarter I reflect on the moving speech that Maggie Frawley presented at the Tiny Tickers Ball and I would again like to encourage our members to access our Caring Hears Program. If you are feeling overwhelmed or need someone to talk too as well as our remarkable Family Support Coordinators HeartKids offers financial support to access professional counseling. Please see our website for more information or call. Till next time .... warm regards David Rose on behalf of the team - Chief Executive Officer Contents 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 CEO Update Tiny Tickers Ball Community Events Family Camp Mother s Day Lunch Member Updates Family Support News Olivia s Story Heart Champion & Bequests Regional Roundup Regional RoundUp Cont d Bereavement Page Our Team Our Supporters Diary Dates Editor David Rose Design Snap Printing Eastwood Contributors Mardi Aplin Jenny Azzopardi Allison Burgess Lisa Chamberlin Bianca Ciccia Casey Cox Dawn Everingham Sarah Henderson Smith Erin Kennedy Natalea Litchfield Kim Mackie Alisa McDonald David Rose HeartKids NSW PO Box 170 Westmead Hospital Westmead NSW 2145 www.heartkidsnsw.org.au 02 9294 0800 Contact Us HeartKids Newsletter Issue 2 3 High Rollers Big Band Clayton Hickey (PKF Lawler) Brian Pereira (Viatek) with James Tobin (Channel 7) Batucada Brasil entertain the guests. Tiny Tickers Ball 30th August 2014 The hearts were racing at this year s Brazilian Carnivale themed Tiny Tickers ball with over 420 people attending the evening at the Westin Sydney on Saturday 30th August. A big thank you to all our major sponsors and event sponsors for helping HeartKids NSW put on a magnificent night for all our guests. A special thank you to our platinum sponsors PKF Lawler & Viatek. The guests were early to hit the dance floor with the rhythm of Batucada Brasil starting the Conga line with their drumming and Brazilian moves. The evening was a night filled with emotion fun and a specific importance placed on raising money for our special heart kids and their families. HeartKids NSW are proud to announce that we raised just under 110K which will enable our team to continue providing our support services to our families. An enormous thank you goes out to all our guests for digging deep and to all of our volunteers who gave their time in the lead up to the evening and on the day to assist in this very successful result. Photos courtesy of Redbelly Photography & MickG Photography Ballroom at The Westin 4 HeartKids Newsletter Issue 2 Alisa McDonald & Bianca Ciccia (HeartKids NSW) Dom Frawley (Hall of Fame) with Jayne Blake and Dave Rose (HeartKids NSW) gram grants rtKids NSW can ildren affected How do I become a Heart Champion Regular Giver Becoming a Heart Champion is easy. You can either Option 1 Sign on online by completing your details and setting up payment via our safe gateway at http nswheartskidsdonationgateway.gofundraise.com.au Option 2 Complete and either post or scan and email the attached confidential sign up form to HeartKids NSW. Option 3 Team Heart Kids City to Surf Thank you. Set up a regular payment directly with your bank. Payments should be made to HeartKids NSW BSB 112 879 Account number 464 722 239 Please include your name and the word champion e.g. J Smith champion as an EFT reference. Should you choose this option please let us know so that we can acknowledge your support. Simply email info heartkidsnsw.org.au. ongoing comprehensive support to children with As little having a great make at The 2014 Sun Herald City 2 Surf was hearthuge and their families.with our amazing runners as 2 a week can time a the event. Collectively they a disease success world of difference to a little heart in need managed to raise over 30 000 for HeartKids NSW such a phenomenal effort and one that we are very thankful for. A special thank chers who are working toto Team Mia who have raised over 11 000 in memory of Heart Angel Mia. Below are some pictures of the day and quotes from you bly high mortality rate. our runners about their experience. se (CHD) and the families ervices focus on ensuring e also advocate on behalf eness about the disease Your regular gift will play an enormous role in empowering HeartKids NSW to provide Regular Giving Florence got her own bib and a finisher s medal so I guess she can say that she has also completed her first fun run although I think it will be her easiest trip up Heartbreak Hill (considering she slept the whole way up the hill whilst my husband pushed the pram) - Elise Stade mum to heart kid Florence (10 months). It was such an amazing day the atmosphere was electric. It was really great when I was running to see other members of Team HeartKidscheering me on as they ran past. It was truly....inspiring - Allison Hembrow Lauren & Lachlan Novak TEAM ELI Paul and I were very excited to be completing our very first City 2 Surf this year - after many years of just thinking about doing it. What made it even more special for us was that we were able to raise money for HeartKids NSW. Our 11 year old son was born with Tetralogy of Fallot back in 2003 and since then we have valued the support that HeartKids provides to families like ours. It was humbling to have so many of our friends and family generously donate money and support us in raising money for HeartKids. We set our fundraising goal at 1000 and were so pleased to raise over 1200. - Paul & Emily Koller With all the rain in August the 2014 Pub 2 Pub event ended up being 1.5km longer than expected for competitors but at least the sun was shining. A big thank you to the amazing people who ran in this event on behalf of HeartKids NSW and raised over 6 000. A wonderful effort from our runners whose support is much appreciated. Sue Oswald & Tammie Radley with Tammie s Cooper Xavier and heart kid Joshua (in arms). Sydney s Centennial Parklands truly was the happiest place on the planet on the 24th of August. With the sun shining for the Swisse Color Run entrants were able to experience the full effect of the coloured powder that is thrown on them during the 5km course. We hope everyone had a great time at this event and would like to thank everyone that participated on behalf of HeartKids especially Team Vermunt who were praying for Baby Ellis & All Sick Children we really value your support of our charity. HeartKids Newsletter Issue 2 5 Escapes Program Family Camp Over a sunny weekend on 28th-30th March a record 40 families attended our annual HeartKids Family Camp at Myuna Bay the jewel in our Escapes program. We were delighted to host our biggest Family Camp yet with families from all over NSW attending. Some came from as far away as Canberra and Orange leaving the rain behind for a weekend of fun and activities in the glorious sunny weather. It was a great opportunity to catch up with old friends make new ones to share experiences both good and bad and best of all mum didn t have to cook any meals for 3 whole days. Over the weekend we celebrated a number of birthdays with delicious cupcakes and cakes generously donated by Cake Angels that looked almost too good to eat. Everyone was awake early and eager to get started on Saturday morning on the many different group activities we had on offer. Canoeing the giant swing and the flying fox were all popular amongst the older kids and even the parents. While the little ones enjoyed craft damper making and putt putt golf or just enjoyed exploring with their new friends. Our lazy Sunday was enjoyed relaxing by the pool before we all said goodbye until next year and ventured home and back to reality. All of our Escapes are free for our members and the Family camp is no different including accommodation all meals and activities. (Please note that a state election has been scheduled for this weekend so please ensure you register a postal vote or vote earlier in the week). We have already booked next year s camp again at Myuna Bay for 27-29th March 2015. To register your interest in attending please email Dawn Everingham we will be in touch later in the year with more details and booking forms. HeartKids NSW were delighted to receive Photo from left to right Amira Mujkanovic (CBA) Holly Everingham Dawn Everingham a grant from Commonwealth Bank Erin Kennedy Jenny Azzopardi Community Grants towards next years family camp. To register your interest please visit our website for a booking form. 6 HeartKids Newsletter Issue 2 Mother s Day Pamper HeartKids held its annual Mother s Day Pamper Lunch at The Children s Hospital Westmead on Friday 2nd May 2014. The day was attended by 20 mums from both inside and outside of hospital as well as some of their mums and special friends who have been by their side during their Heart kid s journey. Makeup manicures massage and make-overs were the order of the day as our Mums were treated to a day of pampering from the lovely ladies from The Australasian College of Education and Training Broadway and Massage to Motivate. A delicious morning tea and lunch was kindly provided by Mark Chamberlin and Cake Angels. Our mums were also treated to an array of lucky door prizes some of which included gift bags and hair straighteners kindly donated by The Australian College of Education and Training. It was agreed that at the end of the day that everyone who attended left feeling energised and very special. This is really wonderful what you are doing here (Louisa Mum to Ethan) Introducing HeartKids NSW New Teddy If you would like to own your very own soft and cuddly teddy bear please contact Dawn Everingham at dawn.everingham heartkids.org.au. Cost of this cute little guy is 20 plus 10 postage (please allow 14 days for postage). While stocks last HeartKids Newsletter Issue 2 7 Member Update we wish all of the following Heart Kids the very best Addison Ansell was in CHW for a several weeks recently but is now home. Adam Hines has recently received a new heart. Malakai Yaldo is finally home after spending several months at CHW. Laura Southwick had surgery recently and Mum Simone reports all went well. Ava Machell has been in CHW very recently for orthopaedic surgery and her 6th birthday. Levi Tilt paid a visit to CHW feeling a little unwell but is back home now. Hannah Kennedy was in CHW for a little while recently. Leo Hennricks with Mum Jacinta paid Jenny a visit in the Retreat Room between appointments. Jacob Thurston has had a few short trips to CHW. Libby and Sharrin Andrew with Daniel popped into say hi to Jenny on ESW between appointments in preparation for his upcoming surgery. Megan McKenzie was at CHW for a check up. Megan says that Kennedy is doing well and is off to pre-school next year. Alicia Vukovic was in CHW having her Fontan. Her stay was a little longer than expected but she is back home now in sunny Queensland. Zeeba Amini has had surgery recently and almost ready to go home. Jack Molloy has been in CHW Massaquoi paid very recently having his Fontan a quick visit and has recovered well enough back to to go home. Memphis Jackson CHW. also had his Fontan done and was room buddies with Jack. Memphis is continuing to recover Mike and Kathleen in hospital. Suma New Member Welcome The Girdler family from Sylvania with heart child Peyton who has 3 holes in the heart and Down syndrome. Emily Brand from Elderslie who is an ACHD and has Tetralogy of Fallot with Pulmonary valve replacement. The Ihara family from Lindfield with heart child Ethan who has Tricuspid Atresia The Lacar family from Reid ACT who we wish to pass on our condolences to after the loss of their heart child Bianca. TheMclean family from Tascott with heart child Aidan who has an AVSD canal and Down syndrome. The Blanchard family from Wagga Wagga with heart child Jazelle who has multiple VSD s The Thompson family from Muswellbrook with heart child Poppie who has an ASD two VSD s & mild left Pulmonary Stenosis. TheGuion family from Birmingham Gardens with heart child Bella who has Genetic Heart Disease. TheBarrington & Willingham family from Bradbury with heart child Lilly-Rose who has an ASD & VSD. The Tzanis family from Marsfield with heart child Max who has a VSD & Coarctation of the Aorta. The Wallace & Packham family from Condobolin with heart child Max who has Tetralogy of Fallot. The Munday & Day family from Woden ACT with heart child Audrey who has Truncus Arteriosus VSD & Interrupted Aorta. TheWatling family from Anna Bay with heart child Chad who has a Bicuspid Aortic Valve. The Leighton-Daly family from Alexandria with heart child Emily who has Coarctation of the Aorta VSD & Narrowed Valve. Munday brought Baby Audrey for a visit to the Retreat Room between check-ups. Audrey is doing very well. The Parrish family from Cobbitty with heart child Sophie who has a VSD. The Vimalraj family from The Ponds with heart child Amelia who has Coarctation of the Aorta VSD & ASD. The Makhlouf family from Campsie with heart child Jeremiah who has Hypoplastic Left Ventricle. The Franks family from Edgeworth with heart child Amelia who has Tetralogy of Fallot. The Noppert family from Werrington County with heart child Joshua who has an ASD. The Hill family from Merrylands with heart child Ethan who has TGA. The Jones family from Queenscliff with heart child Dylan who has TAPVR. The Selby family from Castlecrag who are friends of HeartKids. The Selbie family from Castle Cove who are friends of HeartKids. The Johnstone & Henshaw family from Somerton with heart child Aleah who has Tetralogy of Fallot. The Strode family from Yalbraith with heart child Max who has TGA & VSD. The Hoysted family from Guildford with heart child Zara who has a VSD & ASD. The Holland family from Griffith with heart child Moses who has CCTGA VSD & PA. The Webb family from Faulconbridge with heart child Matilda who has Truncus Arteriosus with Interrupted Aortic Arch. The Khattar family from Greystanes with heart child Jeremiah who has Hypoplastic Left Heart Syndrome. 8 HeartKids Newsletter Issue 2 Family Support News Well it has certainly been a busy year at HeartKids. Kim Jenny and Erin have been kept busy visiting our Heart Families in The Edgar Stephen Ward Intensive Care and Grace Ward at The Children s Hospital at Westmead and the Sydney Children s Hospital Randwick. As always it is a pleasure to help out our families in practical and supportive ways when needed. In addition to the support we usually provide to our families (including meal vouchers Coles and petrol cards and care bags) we were delighted to donate a flat screen TV for the parent retreat room on The Edgar Stephen Ward a much needed breast pump for our nursing mothers and 2 more Chair beds. We also have hosted many Family Escapes including Family Camp Mother s Day Pamper Day Heart Angel Family Day Regional Roadshows and our Hug a Bear Picnic Day. We are also looking forward to catching up with families at some of our upcoming events which include Teen Day Grandparents High Tea Heart Dad s Day out Parent information Evening and Christmas parties throughout the state. We are also very excited to launch our new playgroup especially for families with heart children. Please check our website for more details on all of these exciting events. We hope all our heart kids stayed well during the winter months and we wish any families in hospital a speedy recovery from their surgeries. Please remember to let us know if you are coming into either of the Sydney Children s Hospitals so we can ensure a level of support. 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 HeartKids Newsletter Issue 2 9 Olivia s Story Olivia was born on the 18th April 2013 the first baby for Casey & Nicholas. She was only three days old when she was admitted to John Hunter Hospital Olivia had a temperature and feeding problems she was in intensive care for each day trying to keep her milk down and going to the hospital and doctor s appointments every week. When the doctors told us that Olivia needed to get to 5kg before they could perform the lifesaving heart operation I didn t think in a million years it would have been as hard as it was. We were advised to use a high calorie formula which was put in a feeding tube so it would stay down in a healthy baby feeding time was around 30mins Olivia s feeding took an hour or more because we needed to hold her after the feeding for at least an hour to make sure she wasn t sick. I felt I was acting more as Olivia s nurse than her mother I had to learn how to give her medication and how to prepare the pump for feeding I felt so worried that I wouldn t learn how to do all of these things for Olivia and she would never get well. Slowly but surely Olivia finally got to the 5kgs. The operation was a great success on the 30th of January 2014 only five months after her operation she was given a clean bill of health both holes are fixed Olivia was growing putting on weight and enjoying her life. I love her more than I can say two weeks and from a routine heart scan completed by the doctors they found two holes in her little heart. We couldn t fault the medical staff from the lovely nurses both from the John Hunter Hospital and the Children s Hospital at Westmead to the specialist doctors who helped save our little girl. Both Olivia and I moved into my parent s house for the first five months so they On Olivia s first birthday we were not only celebrating her first year of life but being so grateful and amazed to see how strong brave and sweet our little girl is. Now Olivia is 14 months old and she is doing what babies should be doing. She is crawling walking laughing talking and basically she never stops. She has so much energy and it is so wonderful to see. I m so thankful to Dr Warner Dr Collins Dr Hawker Dr Knipe and Dr Nicholson we are so blessed to have such wonderful doctors we trust them with our most precious little babies every day. I thank God every day for my beautiful girl. I love her more than I can say. ...we are so blessed to have such wonderful doctors The day finally came on the 20th of August 2013 we were given the green light for Olivia s open heart operation. Our family was so terrified and worried about our little girl but we had support from day one from the nurses and doctors. could help me care for Olivia these months of her young life were not about noticing her milestones it was about giving her three medications twice 10 HeartKids Newsletter Issue 2 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 Natalea on 02 9294 0800 Regular Giving The Will to help tomorrow s heart kids today As CEO of HeartKids NSW future planning is so vital to my role. Statistics tell us that over the next twelve months around 2 000 Australian children will be born with heart disease. That s over 20 000 children in the next decade alone. As HeartKids is the only national charity solely focused on Childhood Heart Disease it is imperative we make sure that our organisation is well resourced to care for heart children and their families long into the future. This is where bequests play such an important part. A bequest is a charitable donation written into a person s Will. Through their tremendous gesture of generosity those who elect to leave a bequest to HeartKids NSW will help secure our organisation s longevity. Bequests allow us to confidently plan for the future they help make certain that we can continue funding breakthrough research while continuing to provide comprehensive support which heart families so dearly need during their challenging journey with CHD. If you would you like to learn more about becoming part of the solution for a better future for children with CHD I invite you to contact HeartKids NSW to receive an information booklet. Yours sincerely David Rose Have you updated your current details with us Please send any amendments to mail heartkidsnsw.org.au so we can update our records. HeartKids Newsletter Issue 2 11 Regional Roundup HeartKids Connect Regional Roadshow HeartKids NSW are delighted to have completed 2 Regional Roadshows over the past few months. Our first one in May covered Northern NSW (Taree Port Macquarie & Coffs Harbour) and July included Tamworth Armidale and Singleton. Family Support Coordinator Kim Mackie hit the road meeting up with local families and hospitals in our regional areas. Our posters and brochures were well received and we are very excited about continuing to grow our presence in these areas. Stay tuned for details about our next roadshow later in the year. News from the ACT Globetrotter are a proud partner of the University of Canberra Brumbies Super XV rugby team and very kindly offered some tickets to some of our ACT families to attend a game. Heartkid Thomas (10yrs) loves football but finds it tough not to be able to join his friends in a game. Thomas had never been to a Brumbies game. The smile on his face and his excitement at going to the game were just priceless. To top it off the Brumbies beat the Rebels plus he was able to get autographs and photos with some of the players. When he came home he had a grin from ear to ear Thomas tells me it s these occasional special treats that make him feel that sometimes it s ok to be a heartkid .For a heartparent knowing that your child has forgotten his limitations for a short while is a very special gift . Sarah Henderson-Smith - Mum of Thomas Mad Hatters Tea Party Delicious food and fun was had at the Canberra HeartKids Mad Hatter s Tea Party in August. About 60 people enjoyed the fine food and tea at Adore Tea in Gold Creek. The Mad Hatter himself kept us entertained and there were plenty of dazzling hats being worn as well as some very creative ones made out of placemats Also some great raffle and lucky door prizes were won. Huge thanks to everyone who came along on the day to support the wonderful work of HeartKids. Also special thanks to Adore Tea as well as Donna Larkin from Drama Stars Academy Naomi Robinson from Arbonne Amarylise Bessey from Kaszazz and Elise Stade for their generous donations towards our raffle. Regional Representative News Our Regional Representatives are volunteers and are Heart Parents or Adult heart kids who live in the area they are representing. They are available for our members to contact to have a chat organise social catch ups organise fundraising events and to provide information about HeartKids NSW. A warm welcome our new Regional Representative s Kristie Hughes Central Coast Yvette Coulon Mid North Coast and Melissa and Jeremy Fisher Northern Rivers. Contact details for all of our Regional Representatives can be found on Page 15. HeartKids NSW are looking for more Volunteer Regional Representative s for the Orana Far West Murray Hunter and Northern Inland areas. For more information contact Allison Burgess Regional Coordinator. 12 HeartKids Newsletter Issue 2 News from Newcastle Queen of Hearts High Tea Our Queens of Hearts High Tea in Newcastle brought together many families and friends affected by CHD. Held at the Belmont 16 Foot Sailing Club overlooking beautiful Lake Macquarie attendees learned about the realities of living with a child affected by CHD (thanks to our guest speaker Rebecca Johnson) and then enjoyed delightful food fun raffles and auctions with all proceeds going towards supporting families within the region. HeartKids NSW presents our first Hall of Fame and Life Member Awards HeartKids were delighted to announce the first Hall of Fame and Life Member awards at this year s Tiny Tickers Ball. Peter & Kay Knox (Alpine Nurseries) Hall of Fame Award & Dom Frawley Life member Award. Wollongong to Woolwich Con Dedes a heart kid himself recently completed a mammoth walk from Wollongong to Woolwich in aid of HeartKids NSW & Heart Research Australia. Finishing at his state-of-the-art restaurant Deckhouse in Woolwich Con s 100km feat took 24 hours to complete and raised an amazing 82 000 that will be divided equally and distributed to the 2 charities close to Con s heart - HeartKids NSW & Heart Research Australia. We would like to extend our CONGRATULATIONS to Con for this amazing achievement and also say a huge thank you to him for his phenomenal contribution to our special charity. Con s support is invaluable and always greatly appreciated. Sydney Harbour Tall Ships Sunday 2nd November 2014 Free for our Heart Dads members Includes Buffet lunch with open bar (Beer Wine Juice Soft drink) and 2 hour cruise. Mast Climb for the adventurous (Not all Dads due to the time factor and we are not the only people on the cruise. Also Dads can t drink alcohol before climbing). Meet at Campbell s Cove (Rocks Area) at 10. 45am Event is strictly limited to Heart Dads and Heart Granddads only and space is limited first in best dressed RSVP to Jenny Azzopardi by Friday 24th October 2014 HeartKids Newsletter Issue 2 13 Heart Angel Support Program Family Day Thanks for the great day Ladies - Rob Aspey HeartKids recently held a Heart Angel Family Day at William Clarke College in Kellyville. It was a glorious sunny day and the kids had a ball on the jumping castle chasing bubbles blown by Fairy Fifi and were enthralled by Peter the magician. The BBQ lunch was ably cooked by FSCs Jenny and Erin whilst Kim chatted and caught up with families she has met over her years with HeartKids. Our lunch ended with gorgeous donated cupcakes and coffee. It was a chance for families who have had the tragedy of losing a child to CHD to talk share their experiences and remember their beautiful children. We would like to thank Funtime Jumping Castles for their castle Peter and Jess from Foreverland for the entertainment and Cath s Cupcake Mill for the cupcakes which were all donated for our day. It was a lovely day with some beautiful families that understand the heartache of losing a heart child. Thanks to HeartKids for remembering our angels. - Wendy Filewood It was a wonderful day thank you HeartKids for remembering our beautiful little babies xxx. - Rinda Gilmour Thankyou HeartKids Kim Jenny and Erin for a lovely day we met some beautiful families. We all enjoyed ourselves and both Charlie and Lyndall had a wonderful day playing. Charlie loved the fairy and talked about her all the way home. - Wendy Filewood Heart Angels April September 2014 We are thinking of all families whose Heart Angels anniversary falls at this time... Macie Aspey Daniel Brown Zeb Cooper Alexander Curmi Taylor Douglas Ryan Filewood Malachy Frawley Stella Tunks Frawley Rosemary Gill Ruby Glen Lene Hansen Ruby Hawkins Casey Holland Lachlan Hulsman Fuhelava Jensen Arwen Walters Sean Kelly Imogen King Lucy Lance Isabella Lynch Madison Mangan Thomas Mc Glynn Zachariah Moore Ayden Peychers Mikaela Rawlinson Jackson Seaton Alice Taylor Coralie Thurlow Noah Tuiravaki Pangaea Tullipan Samson Wright. 14 HeartKids Newsletter Issue 2 A w a r d s s le t S mps s r s r P ( o s sf iss p is s la y o g in h is is S ) r ) lo g e ee s e s e p a a apeSna oanopfolinlin t Pm eaode t olin apoo opg lotro s oa oino h iso r g eerrd re S hsoo r s r ( P P alePaasgee d is pp la y lo g o s t inis to rise ro r d e r ) e p a r t e e o e m ofes ra (ra tleka t pa il h o dalaky t t la rlas g o sf sttrt t o h r do f o otnp isn s o s ( le g e e 5 d is la y lo g o s in h h d ) p P a s 1 1 5 P le r s t s e eil il or ke e o hp t o r s s t o oh o e f r h is la n t d o c u m e n t 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 ) 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 ) P a g Pp o e5s1o r s P le d s e usm e dstispp la ye lom a il f o r linh is o oprhd e o s a s t o o la r g e f o r t h is 1 Sea g n 5 ( P a o a s e e n e a r a t e g o s in t k t o t r ) le c e d o c u m e n t S p n s o r s ( P le a s e d is p la y lo g o s t h is o r d r ) HEARTKIDS WOULD LIKE TO THANK OUR SPONSORS & oSUPPORTERS FORinTHEIReGENEROUS CONTRIBUTIONS AND SUPPORT. (sP ( Pa S a s d is o r s y( P le a g e in is h tla y r o g d )s r ) t h is o r d e r ) le le e oe s p la la lo g oss o sd in p is is lo r oe in s p n d is p y lo t h o d e r 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 N a t io a t io P a r tP a rrtsn e r s N n a l n a l n e N a t io n a l P a r t n e r s N a a r na l s N a t io n a l P t iotn e rP a r t n e r s NATIONAL PARTNERS 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 io N a t io n aN a ta r nn al rP an t n e ra r t n e r s l P iot Nae t s r a l P s N a t io n a l P a r t n e r s Barney Bedelis Roy Lee Abercrombies Uniforms Millhaven Financial Services 2 1 S e p t e m b e r H u g a B e a r P ic n ic Paul Broad Miss L Lou Asquith Public School Seem t e m b e r Newscorp S ept pber Ross Buckingham Elizabeth McLean Bellbird Park Bowling Club NortherneBeaches Care&PBike 1 2 f o r d e t a ils 2 1 2 1 B H 2 7 A C T P ic n ic S e a g e Fest P ic ic2 1 icu g a B a r P ic n ic C aPhildBurgin e s Raelene McLenaghan Cessnock City Council H u g Hau g eaa rB e a rnP ic nPlaydaysoPre School d a y t o b e c o n f ir m e d ) le n a D a t r O c t b e r ( d a d s 2 7 A C T PInternational e 1 2 f o r d e t n S ee P J & B Caruso Margaret McManus Coffs Harbour City2Council AP ic nP ic S e e SPe e Quota fic 2 icd o r ad ilsa gof Gloucester a ils 7 A C T C T ic n ic a g e a g2e 11 Tre e n t a ye t a ils 2 7 P 1 1 o f e D C a lee p ta r D e rleensd aCr aD an d a rleD a taers D a t e s C le t C s n d ea S n d e m b a t Helen Chritie-Perez Keith Morgan Crown Solicitors Ritchies 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 ) be r id O c t o b e r b(ed a d s a d s d a yRutherford amtfK dm e d ) R u g b y C u p O r a n g e S e e P a g e 1 O c t o r ( d d a y t o bteo c2oe H ir Public School b 5n fceo n eir )s N S W 2 Daniela B e a r P e r e m H b r e p t e mS ic n Tony Fulcrum Risk S e p t1e mu ge SCumminsp tic S ebpetre m b e r Munro 1 1 T e e n D a y Christine Dunna eB e a2r1e H uJohn d e tr aP ic n ic Palmer Gilroy Catholic College Scribbles Kindya r e n t s H ig h T e a 2 6 G r a n d p 7u A Ca 2 1 a ru g 2 e ic g a 1 2g a rBic a g T B ic n ic P P fa B eic ro P e 1 1 T 2 1 2HAlannaPEvans Sic1n H u g P ic nLomaen ic ils e H Parrish Graincorp C a le n d a r D a t e s 1 1 T e e n eDeany D a y 2 5 Singleton sHeights Pre School O r a n g e S e e P a g e 1 2 f o H e a r t K id N S W R u g b y C u p ic O c t o b e r2 7 A C T 2d a ynC2T 7S e e cT aPfic n1 eRadleye t a ils 2 f o r d e t a ils ( d a d s P ic t o b A C Andrew2 dS) e e d a g e 1 e P ng e m f o r P o ir ic 7 2 5 H 5 H K id s id N S u g b y a Cbuypa e nrta nHFC S T e a a g P 1 O or f et de W R u gn d p C u p s O ig h e a 2 7 AAngela FotheringhameP ic n icf o r e e a a e 1 2 f o r d e t a ils Gregory Bros Jewellers2 e a r t e a r t K N SsW R 2 6 SouthernrPowergre n gee SPe e e a g2e f1 2 d o r a ilst a ils C T P ic n ic S e e A a g 1 2 S e d P t g ils P Gr DanielaD t o b e O c (t d a Osr tdoabyKathy a yc st o fairemceo n feirc oend )ir m eGulgong Public School Gerlach o bd c ( d e rt o ( d e d o n by t o db m S e p t e m b e r Robertson ) St John the Evangelist Catholic High School d d f d) 1 T e e nO c a y r 1 e a d s b a OC a oKay Gibbsd st e s y t o b e MissfR Santos c t le n d a(rd D a d a b e r a c o n ir m e d ) 2 6 G a G a n H s T eh T English Hair ig a Heathcote High School2 r6 n drp a rdepnatrse n tig hH Stevie e a T y n r 2 5 H e a r1 K id se e n 1 aReueg1b y e eu p D O y a n g e S e e P a g e 1 2 f o r d e t a ils t 1 T N S D 2 1 Hotg a & Custom ic n ic H u Rod B e a r P Run Kathy Gibson 1 W T y 1 n D aCKerryaSearle Tenterfield Bowling Club 1 1 T e e n D a y S e 6Susanb 5 aHe n tr s5 HH e2 NTSeW LisaSSelbiepW ORrC g b y O ruap g O rgSee e eP afg e d e tMedicaloarils e t a ils Highley ig a r Hid R t g id s CNu y a n g S n a n g 2 S e e P 2 feils d d The Council of the City of Dubbo e s K y 1 1 o r St 2 p t G rm 2 e r r e a 2t K id s h 5 t K a a r uN bW RuSg b u u p e C e e Pe a Junction 1 a ga o r 2 eft Associates e a n d p a ils DraAdam s N S W R u g b y C u p O r Smith S e e P a g e2 1 2 Keymer tChildcare Centrea g e 1 2 f o r d e tWaratahs Rugby Club Wagga Wagga Therese a n g e 2 5 H e r t K id Hodgkins 7 A o r Td e icils S e e P f C P a n ic 2 r r e n ps a n nd e 2 1 Chris Holmannrd p aicennicG Haig h t Ta eStilloneig h T e a H u g 2 6 B ea 2 6PGrr an6tdsp a Linda rH ig ths THe a a Gr a Kindalin Early Childhood Learning Centre Westfield Hornsby 2 6 GIngridpHybler s H ig h T e a Mary Stoneberg n O c t Kurtosh ( d a d s d a y t o b e c o n f ir m e d ) o b e r Cr aa d a n n t a r D a t e s le r e d 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 Debra Ilacqua L & H Sulman Lennox Head Public School T e e n D a Public School Tanya Jannsen Chris & Virginia Tanna 1 1 Leppington y 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 ) Kate Jones Lions Club of Balgowlah S e p t e m b e r Jacinta Vimalraj 2 5 LucasrGardens School R u g b y C u p O r a n g e S e e P a g e 1 2 f o r d e t a ils H e a t K id s N S W Stacey Ward 1 1 Paul Kolatchen T e e n D a y Kristie Lamb Jessica Ware M & K Lawyers G a 1 a r e d e 2 5 2 1a r H u s N S W R u gJackieP p O r ic g e S e2 6P a gre n d Way Caf s aH ig h T e a Kerri Langdon a B e a y C u ic n a n H e t K id g b r Wright e Malows2p f o r n t t ils Layton-Daly Family Medowir Lions Club INDIVIDUAL SUPPORTERS C a le CORPORATE SCHOOL SUPPORTERSn d a r D a t e s C a leC a lern d a rt e sa t e s C a le n d a S eD a t e sb e r n d a D a D r p t e m C a le n d a r D a t e s S e p t e m b e r 2 6 G r a n d p a r e n t s H ig h T e a ic n ic 1 2 72 1 H uP ica ic eSaere PP a g e 2 f o r d e t a ils A C T g n B HeartKids Newsletter Issue 2 15 Calendar of Events Full details are on our website under What s on tab October 8 PlayGroup Castle Hill Indoor Sports Centre Details & RSVP Erin Kennedy erin.kennedy heartkids.org.au November 2 Heart Dad s Day Out Sydney Tallships Sydney Harbour Details & RSVP Jenny Azzopardi jenny.azzopardi heartkids.org.au 11 Teen Bowling Castle Hill AMF Details & RSVP Erin Kennedy erin.kennedy heartkids.org.au or Jenny Azzopardi jenny.azzopardi heartkids.org.au 8 9 Newcastle Christmas Party Details & RSVP Allison Burgess allison.burgess heartkids.org.au Funflights Newcastle & Broken Hill Details & RSVP Jenny Azzopardi jenny.azzopardi heartkids.org.au 25 HeartKids NSW Rugby Cup Orange Details & RSVP Mardi Aplin mardi.aplin heartkids.org.au 23 26 30 Orange Christmas Party Details & RSVP Mardi Aplin mardi.aplin heartkids.org.au 26 Grandparents High Tea Novotel Homebush Details & RSVP Kim Mackie kim.mackie heartkids.org.au Sydney Christmas Party Kellyville Details & RSVP Kim Mackie kim.mackie heartkids.org.au 30 Parent Information Night Heart kids starting school Wenty Leagues Club Details & RSVP Kim Mackie kim.mackie heartkids.org.au ACT Christmas Party Details & RSVP Sarah Henderson-Smith sarah.henderson-smith heartkids.org.au OUR CHARTER 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. Are you interested in joining a HeartKids playgroup We are currently looking into holding a regular play group 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.