2014 winter heartkids victoria tasmania magazine
DESCRIPTION
Magazine for families and friends of HeartKids Victoria-TasmaniaTRANSCRIPT
* Member Survey Results * Bardot Junior Fashion Show
Quarterly Magazine for Victoria and TasmaniaWinter 2014 Volume 24 Issue 2
support • awareness • research • advocacy
* Great Gatsby Gala
Permission to reprint any of the personal stories in this magazine is
required from the author or the Chairperson. Any other articles may be
reprinted with an acknowledgement to HeartKids Vic Inc.
Please note that articles published in this magazine do not imply
endorsement and may not reflect overall views of HeartKids Vic Inc.
Also note that the opinions expressed in child stories represent
personal experiences and that medical details are specific to each
case. Although the conditions may appear similar to your child’s,
other details may differ. Parents requiring more specific information
should check with their child’s cardiologist.
Well, the end of the financial year has passed and we have entered the 2014/2015 financial year with new challenges and objectives.
At HeartKids this includes looking at how we can improve and increase our support
to the children and families who require our assistance.
To that end we are working on a number of areas at present within our Family Support Programs which
we hope will come to fruition over the next twelve months. These include, but are by no means limited to:
• LookingathowwecanimproveoursupportforTeens
• CreatingourownAPPtomakeinformationmoreaccessible
• AdditionalsupportforourTasmanianchildrenandfamilies
• LookingathowtoexpandourregionalVictoriasupport
• ContinuingtoincreaseawarenessofCHDinthecommunity.
We are very pleased to advise that the Family Support Team is directly engaged with a major Grant-In-Aid Research Project “Family coping with Child heart disease”. This is being investigated by Professor Alun Jackson and his team at the Heart Research Centre, The Robinson Institute and Royal Melbourne Hospital and will aim to identify specific needs of families in this position that can be met by adapting existing programs.
Other initiatives to look out for include:
• ThedevelopmentofaCorporateMembershipModelforourvalued supporters in this area
• Thelaunchofournew'OffTheCuff'speakersluncheons
• HeartKidsasacharitypartnerofthenewMelbourneStormLadiessupportergroup“ThePurpleHearts”
We will always endeavour to keep our website up to date and place new items on our Facebook page, so please stay connected.
Warm regards Norm
Norm Hutton
CEO
HeartKids Vic/Tas
Our Team HeartKids Vic Inc Board 2013-2014 * Chairperson: Phil Riggio * Vice Chairperson: Wayne Crofts * Treasurer: Joseph Eid * Secretary: Phil Riggio * General Board Members: Terry Hopkins Ashley Koenig Tania Tytherleigh Claire Gluyas Anthony Flapper
HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 [email protected] * Support Manager Tracy Stanley 0478 091 773 [email protected] * Family Support Coordinators Sherrie McDonald 0431 544 510 [email protected] Amy Heafield 0421 518 366 [email protected] * Member Activities Coordinator Lynette McCoullough [email protected] * Membership/Magazine Coordinator Margaret Patullo [email protected] * Office Manager Sandra Zlatanovski [email protected] * Operations and Administration Coordinator Paola Rossi [email protected] *Corporate Engagement Manager Lina Marrocco [email protected] * Fundraiser & Events Coordinator Pruedonce Bainbridge [email protected] * Magazine [email protected]
Front cover: Bardot Junior Fashion Show
Photo courtesy of Joanne Arrowsmith
Thanks to all who sent photos and information for this edition.
Contributions are always welcome - send to: [email protected]
Thanks to Fuji Xerox and Documents On Call for printing our magazines.
Thanks to Gordon Patullo for post processing of some digital images.
HeartKids Vic Inc proudly supports children with heart
disease and their families throughout Victoria and Tasmania.
For Tasmanian enquiries - please refer to the back page for
our Tasmanian Branch Coordinators’ contact details.
Matters of the Heart - Chief Executive Officer
2
In This Issue 3-4 Coming Events
5 HeartKids at Bardot Junior
6-7 HeartKids Great Gatsby Gala
8 Member Survey Results
9 Zarliya's Story 10 HeartKids Australia News
10 Cuppa For HeartKids
11 Member Activities & Achievements
12 New Babies 12 Support Matters
13 RCH Specialist Clinics Check-In
14-15 Hospital Happenings at RCH
16-17 Reflections 18 Branch News 19 Tasmania News
20-21 HeartKids Fundraising Supporters
22 Donation Acknowledgements
23 Sponsors and Supporters
24 Contact Details and Diary Dates
Coming Events
Congratulations Athol Guy
HeartKids Education Day - Register NOW!Date: Join us on Saturday 2nd August 2014
Venue: The Ella Latham Auditorium, The Royal Children’s Hospital, Melbourne
HeartKids Australia is holding a national childhood heart disease (CHD)EducationDaytoprovidecurrentandrelevantinformationaboutCHDtreatmentandcareforparents,caregiversandfamiliesaffected by childhood heart disease.
This day will include updates from renowned speakers in childhood heart disease treatment and will educate parents and caregiversaboutissuesthataffectchildrenlivingwithCHDs,including research updates, support services, transplantation, andtransitioningtoadultCHDcare.Thesessionswilloffertheopportunity for audience questions and provide an opportunity for families to interact with others in their position.
ProgramDetailswillbeavailablesoon–pleasecheckourwebsiteand Facebook page for details.
Please note attendees must be sixteen years of age or over, and there is a fee of $50 per person.
YoucanregisterfortheEducationDayonlineathttps://www.heartkids.org.au/education-day-registration-page/
Ballarat Bush Dance AfairdinkumBushDance.Comeone,comeall,afunnightawaitsyou.
When: Saturday 2nd August 2014
Where: Dean Hall, Ballarat/Daylesford Road, Dean VIC 3363
Time: 7:30pm for 8:00pm commencement
Cost: Adults $15, Children $5, Children under 5 years - free
Supper at conclusion, please bring a plate to share
Tea/coffeeandsoftdrinkprovided–pleasenoteasthisisachildfriendly fundraiser alcohol is prohibited. PleasecontactAlanSmithandRohiniDobellM:0400984975.Funds raised will be donated to HeartKids Victoria/Tasmania
Fontan Education DayDate: Sunday, 3rd August 2014; Time: 8:30am – 4:30pm
Venue: The Royal Children’s Hospital, Melbourne
Thisforum,thefirst'FontanEducationDay',willprovideauniqueopportunity to hear from specialists in paediatric cardiology and congenital heart disease. This is set to be an informative meeting for patients, families and carers, doctors, researchers and allied health workers. It builds on the good works of the Fontan Registry–anAustralianandNewZealanddatabase.Thisinitiativeis the world’s largest database of Fontan patients, and it involves specialists and researchers working closely together to ensure patients and their families will benefit from the highest standard of evidence-based care and treatment.
TheFontanEducationDaywillprovidetheopportunityforpatientsand their families to hear from experts in the field, and importantly, will also share patient insights and lived experience.
For the relevant prices and to book your tickets please go to: http://www.trybooking.com/89311
Refreshments: Please note that the ticket price includes morning tea, lunch and afternoon tea. If you have particular dietary requirements, please contact us: [email protected]
New Zealand visitors can contact Julie Nielsen to enquire about potential financial support from @Heart: [email protected]
For additional information and queries, email: [email protected]:+61431659911
Congratulations to our ambassador Athol Guy. The Seekers have been appointed officers in the Order of Australia(AO)fortheirservicesto the performing arts.
'Off The Cuff' Inaugural LuncheonDate: Friday 8th August, commencing at 1.30pm
Inaugural “Off the Cuff” Luncheon at The Kelvin Club, 14-30 Melbourne Place, Melbourne, proudly sponsored by Jet Couriers
Join MC Glenn Ridge with special Guest Speaker Brian Waldron
Brian Waldron has arguably ridden the greatest roller coaster of any Administrator in Australian sport.
Brian was considered one of Australia’s leading sports administrators. Following beginnings at Richmond FootballClubheprogressedthroughtoChiefExecutiveroles at St Kilda Football Club, the Melbourne Storm and the Melbourne Rebels. In a career spanning two decades he experienced success in the three biggest sporting codes in the country.
In April 2010 Brian’s world changed following the revelations of the Melbourne Storm Salary Cap inquiry. After four years out of public life, Brian has decided to share his thoughts for the first time.
Limited tickets are available for this first time event. T: 03 9329 0446, $95pp
Please note: HeartKids insists Chatham House Rules apply for its “Off the Cuff” series.
3
Circus QuirkusCircusQuirkusisanon-animal,familyoriented90minuteshow.
ItincludesChristof,Australia'sbest-lovedclown,theamazing
"ZimBoys"andatroupeoflocalandinternationalperformers
who take the audience through traditional circus acts.
See www.circusquirkus.com.au
Note: each person attending needs a ticket, regardless of age.
Circus Quirkus BendigoWhen: Thursday 21st August 2014
Where: Kangaroo Flat Leisure Centre YMCA, 9 Browning
Street, Kangaroo Flat
Time: 12:30pm (2:00pm finish) and 5:30pm (7:00pm finish)
PleaseRSVPtoNadineM:0413710342orE:[email protected].
au by Monday 4 August 2014. Please provide names of all
family members attending.
ThisshowissponsoredbytheImmuneDeficiencyFoundation
of Australia and local businesses.
Circus Quirkus MelbourneDate: Sunday 24th August, Show times: 10am, 1pm, 4pm
Location: Melbourne Convention and Exhibition Centre,
1 Convention Centre Place, South Wharf
Free tickets to attend this event can be ordered by families
who have a heart child or heart angel. Please book tickets for
immediate family only, at www.trybooking.com/EYQY
We will post you the tickets a week or so before the event.
This show is sponsored by the Rotary Club of Preston and local
businesses.
Magnificent MissDate: 24th August
The event includes Models, Hairstylists, Make Up Artists, as well
asPhotographersandFashionDesigners,workingtogetherand
competing against each other to showcase their skills and create
magnificent looks as they strive to be the next Magnificent Miss
Champion. The final is held at The Palms at Crown. Proceeds
from the event are donated to HeartKids Victoria/Tasmania.
For further information about the event please visit:
www.magnificentmiss.com.au
'Hearts, Hats & Hooves'Date: Thursday 18th September, 2014
Venue: Maia, Atlantic in Docklands
LaunchyourselfintothefunofspringracingatourHearts,Hats
& Hooves cocktail party. Get a first-hand look at the fashion
and millinery forecast for the Spring racing carnival, enter our
Fashions in the Field competition and meet racing personalities.
Savethedateforthisevent–detailswillbepostedonour
website and Facebook page.
Candlebark Farm Family CampDate : 5pm Friday 19th - 2pm Sunday 21st September
Venue: Candlebark Farm, Healesville; the camp is situated
at 531 Healesville-KooWeeRup Road, Healesville.
Families with a heart child or heart angel are invited to express
an interest in attending a relaxed and fun weekend at this
camp. You will be able to meet other HeartKids families and
we will have organised activities throughout the weekend.
Accommodation is camp style with bunk beds (6 bed rooms
and8bedroomsavailable),allwiththeirownshowerand
toilet. See website: http://www.candlebarkfarm.com.au
This camp is generously sponsored by the Kiwanis Clubs of
Division6,sothereisnocostforaccommodationandsome
meals. You will be required to provide your own dinner for
Friday night and there may be an option for parents to eat out
on Saturday night at your own expense.
To show your interest in attending, please book on:
www.trybooking.com/EYKB Please note: If we are not able to
cater for every family who wants to attend, we will give priority
to families who have not attended family camps before and
then to families in order of registration. Please only register
your immediate family so we can accommodate as many
HeartKids families as possible. You will be advised by the end
of August if we can offer your family a place.
Forfurtherdetails,pleasecontactLynetteMcCoulloughon
Box Hill Miniature Trains Day 2014Date: Saturday 11th October, 2014 Times 11am - 2pm
Venue: Corner Elgar & Belmore Roads, Box Hill North
Thanks to the Kiwanis Club of Waverley, families who have a
heart child or heart angel are invited to attend a fun day out at
Box Hill MIniature Trains. A free sausage sizzle lunch and free
train rides will be offered.
Meet in the playground at 11am, enjoy a free sausage sizzle
lunch at 11.30am and free train rides from 12.30pm to 2pm.
Please only book for your immediate family so we can
accommodate as many members as possible. Please book on:
www.trybooking.com/EYNA
ForfurtherdetailspleasecontactLynetteMcCoulloughon
FunFlight Date: Sunday 9th November 2014, 10am – 2pm
Venue: Victorian and Tasmanian aero clubs
(Venues are yet to be confirmed, so please check our event
calendar on our website and the booking site for aero clubs
whichweanticipatemaybeinvolved).
FunFlight is a not-for-profit organisation which organises joy-
flights for children and teenagers touched by a life changing
illness or other adversity.
Families who have a heart child or heart angel are invited to
express their interest in attending this free event. Places are
limited and you must receive a formal offer to attend. Priority
will be given to families who have not attended before.
RSVP as soon as possible by booking on:
www.trybooking.com/CMQL
ContactLynetteMcCoulloughonlynette.mccoullough@
heartkids.org.auor0418548879formoreinformation.
Melbourne MarathonDate: 12th October
Please visit http://melbournemarathon.com.au/ for event
details.
Hoffy’s Rainbow Fun RunDate: 26th October
Venue: Cardinia Reservoir.
All money raised will be donated to HeartKids Victoria/Tasmania.
Savethedate–moredetailstocome.
Myuna Farm DayTo be held in 2015, date to be confirmed.
Coming Events
4
HeartKids strut their stuff at Bardot Junior On Thursday May 1, Bardot Junior opened their new store atEmporiumintheheartoftheCityofMelbourneandwhobetter to hit the fashion runway, as part of the celebrations, than the little heroes from HeartKids.
Our gorgeous models Ryder Boyce, Maeve Coady, Julian Michielin,AlaskaDowie,WilliamArrowsmithandCaitlinJohnson were simply amazing! Once they got over some initial butterflies the children from HeartKids hit that floor with all the courage and attitude with which they have addressed everything in life.
The girls at Bardot Junior loved dressing the six of them and, like everyone at Bardot, found the kids to be truly inspiring. Bardot Junior donated 10% of all the store’s sales on the day to HeartKids, and is committed to providing ongoing support for this very worthy cause in the future.
Bardot Junior is renowned for its keen eye for emerging trends in fashion and its ability to interpret shifting trends to ensure that children remain at the front of the fashion field. Bardot Junior develops fashion for children in sizes 000 to 16, and has 14 stores around the country. Bardot Junior is also available online at www.bardotjunior.com.au
Hamish YoungerMarketing Manager, Bardot
5
HeartKids Victoria/Tasmania...
6
...Great Gatsby GalaThe HeartKids Victoria/Tasmania Great Gatsby Gala was held on Friday 20 June 2014 at the RACV Club in the city. As they entered the foyer our guests compared outfits, posed for photos on the red carpet and were entertained by a pianist as they enjoyed pre dinner drinks. Walking into the venue was like being swept up and placed into another era filled with beautifully beaded flapper dresses, feathers and sharp suits. The ambience of the evening was fun and elegant. The striking black and gold décor
with sparkling martini centrepieces draped with pearls and diamantes set the scene. The stunning décor was matched by a spectacular view of the city of Melbourne. The event was hosted by Sam Kekovich who was an entertaining MC, the Singing Waiters roved around the tablesandtheDanHammillBandhadeveryone dancing to the tunes of the 1920s.Wewereveryfortunatetohavetwo of our ambassadors attend in
Robbie Kearns and Chris Johnson and an apology all the way fromLondonfromHeartKidsambassadorAtholGuy.AspecialthankstoyoungadultsDanielSibberas and Sally Webster who were interviewed by Sam Kekovich about theirjourneyswithCHD.Amemorablevideo featuring many of our inspirational heart children was shown, set to the very appropriate track Living in the Hall Of Fame by will.i.am - to all those who contributed thank you very much.The fundraising efforts of some special supporters were recognised and all were presented with a certificate of appreciation: •JoshuaSharp,whohasraisedover$70,000forHeartKids
through his Sharpies Charity Challenge Foundation •JulieHoffman,whohasraisedover$100,000forHeartKids
through her Hoffy’s Burpee Challenge •Leon&JackieCook,whoholdanannualgolfdayin
honour of their daughter Makayla who died in 2012 and have raised over $50,000 for HeartKids.
Guests competed for their chance to win one of the fabulous prizes on offer. They had the opportunity to win a dazzling white gold and diamond pendant valued at $3000 generously donated by Ian Sharp Jewellery, by purchasing a $50 glass of sparkling
Mumm Champagne. The balloon raffle featured black, silver or gold balloons at different price points of $50, $100 and $200 and each balloon had a special note from a heart child. There was a lot of laughter as everyone popped their balloons together, hoping they were one of the lucky 10 people to win a prize. There were plenty of amazing silent auction items in the Bold Bids auction run by Signed and Framed. People’s Choice employees Rachael and Karen drew the Member’s Card draw, dressed in PJs Run pyjamastopromotethePJsRunbeingheldon27July.Board member Tania Tytherleigh gave a fantastic presentation including her personal experience with her daughter Flynne’s journey with her heart condition. It is important for HeartKids to have strong corporate members and Tania presented our inaugural Corporate Memberships to Biggin & Scott, Grimbos Building Surveyors, Bardot Junior and Canny.Our auctioneer extraordinaire Russell Cambridge from Biggin & Scott was again able to "strut his stuff" for our cause and, along with MC Sam Kekovich, not only entertained but ensured that our auction items reached expectations.Amongst the many who made the great Gatsby Gala come alive were our Principal Sponsor Grimbos Building Surveyors - to AnitaandJohnamassivethankyou.Likewiseourappreciationgoes to our Gold table sponsors, Bardot Junior - thanks to Hamish Younger and everyone at Bardot Junior for your continued support.Further acknowledgement for their generous support also goes to Canny for donating an exclusive, private dinner party for eightpeopleattheirawardwinningLubelsoConceptHomeasanauctionprize,DejaiScottfrom2dscreativefordonatingthegraphicdesign,EpicPhotographywhocapturedthenight,Signwave Campbellfield for the pull-up banners and media wallandadultCHDerRichardLockettwhomadethetripfromCanberra to attend. Thank you to our volunteers Christina, Sally and Chloe who ensured all the balloons and champagne glasses were sold.HeartKids is very thankful for all those involved with making this night such a success. We couldn’t have done this without the generous support of all involved. Thank you to everybody who attended, purchased lucky champagne glasses or balloons, bid on auction items and laughed and danced - you all made the night very special.
Member Survey Results
MynameisLinaMarroccoandIhaverecentlyjoined
HeartKids in the newly created role of Corporate
EngagementManager.Iamexcitedaboutthisrole,
and the difference in the lives of children with heart
disease, that I hope to make.
I come to you with over twenty-five years of fundraising
experience and a passion for making things happen.
Havingraisedmoneyforvariouscharities–it’snow
time to do the same for HeartKids! I can’t wait to start
contributing to HeartKids and raising some dollars!
A new Team Member who is looking for
Corporate Connections ...I welcome the opportunity to speak with any of you who may have
a Corporate connection that you believe may want to financially, or
otherwise, support HeartKids. Please give me their contact details
and I will do the rest!
When I am not working at HeartKids, I can be found reading a
good book, watching a movie or barracking hard for Collingwood!
(Iknownotallofyouwillbehappyaboutthataspectofme!)Ido
look forward to meeting as many of you as I can.
Pleasecontactme([email protected]).
Together we can make a difference!
Thank you to our members who completed the 2014 survey; we value and appreciate your feedback. The survey is part of our development of an effective feedback process for all HeartKids Victoria/Tasmania members and supporters.
The information provided will help guide the planning and implementation of our new Support Programs. These results shed more light on exactly what services, projects, and overall goals members want from us as an organisation.
•ThemajorityofpeopleseeHeartKids'in-hospitalsupportforfamilies is its most important role.
•AskedwhytheyjoinedHeartKids,themajorityofpeopleresponded, “Because I wanted to access ongoing support
from the network of fellow HeartKid families”.
•75%ofrespondentsfollowtheHeartKidsVictoria/TasmaniaFacebook page to feel connected to the HeartKids community.
We are always looking at ways to better support our families. If you have any suggestions please contact our Support Manager, TracyStanley:M:0478091773E:[email protected]
After anaylsing the findings of the survey we will focus activities to ensure alignment within our newly defined Support Program structure.
Some key focus areas are shown below.
In Hospital Program•ImprovedcommunicationaboutHeartKidsand
access to Family Support Coordinators in hospital
•Developbereavementsupportprogram
•Antenatalsupport
•AccommodationandCrisessupport
•Parentconsumables
Connects Program•Organisemorefamilysupportactivitiesacross
Victoria and Tasmania
•Developasiblingprogram
•Providemoreteenbasedactivities
Outreach Program•ExpansionofRegionalandTasmaniansupport
•Developmentofmorereadilyaccessibleresources
For Life Program•Establishatransitionprogramtoeffectively
prepare young adults to best manage their condition in the adult health system.
•Developawebsitespecificallyforteens
•Developarangeofinformationresourcesspecifically for teens
•Peersupportprograms
•Provideinformationaboutcurrentresearch
8
MynameisZarliyaandIhavejustturnedtwo.Iamaheartwarrior,aprincess and a beautiful soul, and I just happen to have Trisomy 21 (DownSyndrome).MyMummasaysthatfromthemomentIwasmade the sun shone brighter, the stars twinkled longer and her heart beat stronger. I have two older sisters, Kiarra who is eighteen, Jamayka who is almost fifteen, and my big brother Jaspa who has just turned four.
My journey began when I was born five weeks early because my Mumma’s placenta stopped working, but she says it was because she couldn’t wait any longer to meet me. I was taken straight away to The Royal Children’s Hospital because I was born with a broken heart.IwasbornwithanAVSD(AtrioventricularSeptalDefect)andTOF(TetralogyofFallot).BasicallyIhadseveralreallybigholesand a few other complicated things as well. I was born strong - I was in hospital for only six days even though I had arrived early.
Adjusting to life at home was easy until I was six weeks old, when the cold I had caught developed into RSV (Respiratory Syncytial Virus) and Pneumonia. Mumma and I were in hospital for sixweeks.Everyonemissedusanditwasreallyhardoneveryonebutweallmadeitthrough.AfterthisIwas in and out of hospital with viral infections for several months. When I was four months old, I started having complications when I cried. It must have been scary for my family to watch me go blue every time I cried. So my doctors decided to admit me to hospital again for my heart surgery, but due to my size and other complications in my heart, they couldn’t repair my heart at this point in time. They decided to insert a shunt to redirect blood flow until I became bigger and stronger. It was then that I got my first zipper. Lifeoverthenextninemonthswasdifficult,tryingtokeepmehealthyandhappyuntilmybigsurgery.
The19thApril2013wasmyheartday.MummaandDaddysaidthiswasthelongestdayoftheirlives.I was in surgery for nine hours and my big sister Jamayka stayed with Mumma at the hospital to help distract her. In true princess style, I was out of ICU in less than twenty four hours and discharged from hospital in six days. Now I have a new zipper. Since my surgery, I have learnt to sit, crawl, stand and about four weeks ago I started to walk. Recently I have even learnt to climb stairs.
Being two is so much fun. I love to dance and sing, but thebest thing isMumma’s cuddles,Daddy’s kissesand chasing my big brother. I absolutely adore Peppa PigandDocMcStuffins,anddancingtoTheWiggles,but really I will get down and boogie to anything. My big sisters take me to the playground sometimes and I give them many smiles in return.
BeingbornwithDownSyndromehasnotheldmeback. I have to practise some things a lot and it takes me a little longer to learn, but I always get there in the end. Mumma says I can be whatever I want to be….to reach for the stars and to dream big, and with the love and support that I get from my family, I know I can do anything.
Zarliya's Story
9
Cuppa for HeartKids 2014
HeartKids is a Partner in an Exciting
Research Project
HeartKids Australia News
I was pleased to participate in the HeartKids Planning day which was held in Sydney in late March. Representatives of HeartKids Australia and the five state HeartKids came together to develop strategic objectives for the organisation. It was a good opportunity to meet and share information with colleagues, all of whom are committed to improving the lives and futures of those affected by childhood heart disease.
Research is a core pillar of HeartKids Australia - to date, we have provided more than $2 million to fund projects into the causes, treatment and management of childhood heart disease. HeartKids Australia is now very pleased to be a partner in a major research project aimed at improving the survival and quality of life of young people and adults with the most severe congenital heart disease.
The project, which will be led by A/Prof Yves d’Udekem, Paediatric Cardiac Surgeon at The Royal Children’s Hospital Melbourne,istitled“TheAustralianandNewZealandFontan Registry: An ideal model of care to improve the adult life of a child born with congenital heart disease”. It will involve all adult congenital heart disease units in Australia andNewZealand,HeartKidsAustraliaandtheNationalHeart Foundation.
RegistrationsforHeartKidsEducationDay2014haveopened. The event which is being held in Melbourne on Saturday August 2, will bring together leading medical and nursing specialists and allied health professionals to share the latest and most relevant information for families affected by childhood heart disease. The program will be available on ourwebsiteinthenearfuture.AFontanEducationDayistobe held at the same venue on the following day.
Planning is also underway for the 2014 Cuppa for HeartKids Campaign which is to be held in August and September. Start thinking about how you will make your cuppa count!
Our team has also been busy relocating offices. After spending a number of years based in Pennant Hills, we are now located in Crows Nest.
Kind regards, Jann
Jann Kingston
CEO
HeartKids Australia
Australian researchers who have formed community
partnerships to improve health outcomes across Australia have
received $11.4 million in Federal Government funding.
Associate Professor Yves d’Udekem d’Acoz ($1.25 million in
NHMRCfunding)willworkwithHeartKidsAustraliaandthe
National Heart Foundation to improve the survival and quality
of life of babies born with severe congenital heart conditions.
The Grant is one of the highlights of grants for health and
medicalresearchawardedbyTheHonPeterDuttonMP,
Federal Minister for Health and Minister for Sport.
MinisterforHealthPeterDuttonsaidthegrantsfurther
demonstrated the Government’s commitment to frontline
services, including health and medical research in Australia.
“Jointly funded by the National Health and Medical Research
Council(NHMRC)andvariouspartners,thefundingsupports14
newPartnershipsforBetterHealth,”MrDuttonsaid.
“The grants encourage alliances between partners who deliver
or make decisions about health care services, and researchers
who can offer tailored, evidence-based solutions.
“This latest announcement includes funding for research that
aims to improve outcomes for children with cerebral palsy,
assess the impact of exposure to toxic chemicals in early life
and enhance the quality of services for young people with
mental illness.
“The partners include hospitals, state governments and patient
representative bodies.”
MrDuttonsaidhewaspleasedtoseeresearchbeing
conducted that is relevant and responsive to the needs of
governments and organisations.
“It is encouraging that Australia’s best health and medical
researchers are responding directly to the needs of those
people and organisations at the front line of improving health
services,” he said.
NHMRCCEOProfessorWarwickAndersonpraisedthehigh
quality of applications received and the spectrum of important
health issues the research addresses.
“These are highly targeted research projects which hold the
potential to deliver better health outcomes for the community,”
Professor Anderson said.
Hosting a Cuppa is a fun and easy way to raise
money and get together with your families and
friends to make a real difference for those affected
byChildhoodHeartDisease.
We would like to invite you to hold your own Cuppa
throughout August and September to help fund
essential support for children with heart disease
and their families. This can be done in many ways
like your work place, sports group, school, mothers
group, play group or a girls or guys night in.
Our website www.cuppaforheartkids.org.au is
full of resources to ensure your Cuppa is a success,
including posters, invitations, recipes and helpful
information on fundraising.
10
Member Activities & Achievements
Child AchievementsZaneZane,6,currentlyattendshissecondyear at Vermont South Special School.
HehadaVSDrepairatfivemonthsof age. Regardless of all the challenges he still faces due to his VCFSyndrome/autism,Zanewassodetermined to write his name for the first time! What an achievement and such a magical moment! His family is so proud of him.
Shannon Here'sShannonreadyforhisfirstday of school at Thomastown Meadows Primary School. He said, 'Iam5yearsold.MumandDadwere told that I would not survive to my first birthday. But here I am andI'mnowdoinggreat.IhaveCardiomyopathyandallisstable.'
Thankful for support from HeartKids & the RCH, and enjoying this new chapter of his life at school with all hisfriends&teachers,Shannon'smessageis'Nevergiveuphope.'
RazzamatazzThe recent Razzamatazz variety show involving dancers, magic and comedy was enjoyed by some of our families during a 60 minute show.
WethanktheImmuneDeficiencyFoundation of Australia for offering our members free tickets to this show.
Catch Up for Over 17'sSome families with young adults who have grown up as 'heartkids'recentlymetforlunch.ThisphotoshowsthenineACHD(AdultswithChildhood-AcquiredHeartDisease)who,alongwithsomeparentsand siblings, were part of the group of twenty-five. This annual catch-up is held in May, remembering the families and young adults who have been involved as volunteerssinceHeartKidsVictoriabeganinMay1990.
HeartKids Victoria 1990-201424 years of Support - Awareness - Research - Advocacy
‘Remembering our Heart Angels and Celebrating our Heart Survivors’
HeartKids Victoria/Tasmania joined thousands of organisations around the nation marking the 25th anniversary of National VolunteerWeekinAustralia(12–18May).Thisyear’scampaigntheme “Celebrate the Power of Volunteering” was all about appreciating and understanding the work of volunteers across the nation.
HeartKids would like to take this opportunity to thank the many volunteers who give so much of their time to make a significant difference to our community. Our volunteers do such a wonderful job in supporting the HeartKids team and more importantly our families. We are only able to provide the activities and services we do with the help of our dedicated team of volunteers.NormHutton,CEOHeartKidsVictoria/Tasmania,said:“National
Volunteer Week 2014, enables us to dedicate and honour our volunteers who donate their time so selflessly. On the 25th National Volunteer Week, we join with other organisations to celebrate our exceptionally skilled volunteers who are not only an asset to our organisation, but also enhance the way we provide services and support our community. This is their day.”IfyouwouldliketovolunteerforHeartKidsVictoria/Tasmania–please complete our volunteer registration form available on our website.
http://heartkidsvictas.org.au/how-you-can-help/volunteering/
National Volunteer WeekCelebrate the Power of Volunteering
Congratulations! Support MattersWelcometotheWinterEditionofourmagazine,it’shardtobelieve that we’re already more than halfway through 2014. We hope to see many of you at two information sessions in August:TheHeartKidsEducationDayisonSaturday2AugustatTheRoyalChildren’sHospital.EducationDaywillprovidecurrentandrelevantinformationaboutCHDtreatmentand care for parents, caregivers and families affected by childhood heart disease. This day will include updates from renowned speakers in childhood heart disease treatment and will educate parents and caregivers about issues that affect childrenlivingwithCHD,includingresearchupdates,supportservices,transplantation,andtransitioningtoadultCHDcare.The sessions will offer the opportunity for audience questions and provide an opportunity for families to interact with others in their position.ThefirstFontanEducationDaywillbeheldonSunday3August at The Royal Children’s Hospital. This forum will provide a unique opportunity to hear from specialists in paediatric cardiology and congenital heart disease. This is set to be an informative meeting for patients, families and carers, doctors, researchers and allied health workers. The Fontan EducationDaywillprovidetheopportunityforpatientsandtheir families to hear from experts in the field, and importantly, will also share patient insights and lived experience.PleasechecktheComingEventssectionofthemagazineandour website www.heartkidsvictas.org.au for full details.TheHeartKidsFamilySupportCoordinatorsDevelopmentprogram proudly supported by Charter Hall is on Thursday 31 July and Friday 1 August. The two day program will be held at The Royal Children’s Hospital, Melbourne. As well as professional development, it provides an opportunity for the Family Support teams from around Australia to come together to share information about services and programs. We look forward to catching up with our interstate colleagues and will provide a report about the outcomes in our Spring magazine.Our support team is busy planning activities for the remainder of the year. For the latest information on upcoming activities andeventspleasechecktheEventsCalendaronourwebsitewww.heartkidsvictas.org.au AreminderthatPrivacyLawspreventusfromviewingthepatient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk and/or nurse or send us a message either via email or text message. You can also write “HeartKids visit requested” on the whiteboard in your child’s room.Have a safe and healthy winter!The Family Support Team
New BabiesCongratulations and our very best wishes to all these
families who have welcomed new babies in recent months.
Jane Jackson and Darren Jones welcome a new son Kade Nicholas Jones who arrived safely on the 21st November
2013. A brother for Scott and heart angel Thomas.
Jay & Yvonne Vuillerman have welcomed the arrival of their son, HK Tai, on 23rd January 2014. He is a baby
brother to Maia.
Joshua Groves & Hannah Jarvis have a baby daughter, HK Alexis, who was born on 24th January. She is a sister
to Bentley.
Christopher & Simone Munro proudly announced the birth of their precious new son, HK Harry, on 31st
January.
Shannon Radford and Stacey Kennedy are pleased to announce the arrival of Elodie on 23rd February. Elodie is
a younger sister for HK Arlyn and Silas.
Tewai & Blaize welcome their beautiful daughter to the world, HK Niar-Ivy Manawanui, born 23rd May.
"He taonga koe taku wahine purotu ka nui taku aroha mou"
Cody Edwards and Courtnay Burfoot proudly announced the birth of their precious son, HK Xavier, on 28th May.
Leo and Josephine Iazzolino are pleased to announce the arrival of Dion on 31st May. Dion is a younger brother
for HK Ava.
Darren Fowler and Narelle Sinclair are proud to announce the safe arrival of Natalie Margaret on the 13th June.
Younger sister to Mikey and HK Jackson.
In each edition of the magazine we like to welcome any new babies who were born in the
last three months.
If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the
magazine, please send us the details.
.
Happy Birthday!A very ‘Happy Birthday’ to all the heart children and their family members celebrating birthdays during Winter!
12
Checking in for Specialist Clinics AppointmentsTheRoyalChildren'sHospitalismakingchangestoreduce the queues and congestion in the waiting areas of Specialist Clinics. The new system will make the check-in process easier for you.In June 2014 RCH introduced two ways to check-in when you arrive for your appointment. You can use the kiosks or RCH mobile phone app.Much like an airport you will not have to go to the desks and queue up to notify a staff member that you have arrived. The new check-in system will also notify you when the clinician is ready to see you.If the clinic is delayed the system can notify you on your mobile when it is time to return to the Clinic waiting area. This will give you more freedom to enjoy other areas of the hospital while you wait.You will not need to stay in the Specialist Clinic waiting area, worried that you will miss your appointment.
Check-in kioskThe kiosks are located near the entrance to Specialist clinicsA,DandE.Bringyourappointmentletterandscanthe barcode. If you forget your appointment letter, swipe your Medicare card. Follow the instructions on the kiosk or ask one of the volunteers for help.Don'tforgettotakeyourticket.
Mobile phone appThere is a mobile phone app coming which can be downloaded from the iPhone or Google Play store.You can download the RCH check-in App before you come to the hospital. You will need to use your appointment letter to register. Download the App Soon!
The Check-in app allows you to:•Check-inonyourmobilephonewhenyouarriveatthe
hospital•Receiveyourclinicticketnumberonyourphone•Receivenotificationsaboutclinicdelaysandwhenthe
clinican is ready to see you•Viewadiaryofyourupcomingappointments•LinktootherinformationaboutRCH
Pathology / Radiology before your appointmentIf you need to have pathology or radiology tests before your clinic appointment, please have these prior to check-in at the kiosk or on your mobile phone app.
When the clinician is ready to see you•YourticketnumberwillbedisplayedontheTVscreenin
the waiting area•Ifyouhaveenteredyourmobilephonenumberonthe
kiosk check-in you will receive the same information on your phone
•Makeyourwaytotheroomnumberindicated•Yourclinicanmaymeetyouonyourway
LargeTVscreenswillbefoundintheFamilyResourceCentre,StarlightRoomandintheA,DandESpecialistClinics waiting areas.
RCH News
Specialist Clinics Check-In
For more information:Go to www.rch.org.au/checkin or scan this QR code for more information about these two ways to check-in for your Specialist Clinic appointment and a link to download the app.
Our thanks to RCH Corporate Communications for providing this article.
Clinic staff make every effort to see you as close as possible to your booked appointment time but sometimes there are delays.
13
Hospital Happenings...
Mother’s Day Morning TeaHeartKids organised a special morning tea for our mothers at The Royal Children’s Hospital on Thursday 8May.Attendeesenjoyed delicious food donatedbyPFDFoodServices, Sweet Treats by Vanessa and Kraft.
Mother's Day Gift BagsOnMother’sDayoursupportteamdistributed50Mother’sDaygift bags to the mothers in Koala ward and Rosella ward.
This year we were delighted by the generosity of supporters of HeartKids from companies supplying beauty products, nutritional snacks, drinks and delicious baked treats to individuals, families and community groups donating various goodies. It is truly inspiring to know there are such thoughtful and giving people.
We thank all those involved - you helped make a mum smile thisMother'sDayandwearegratefulformakingthispossible.
SpecialthankstoCrabtree&Evelyn,TheCakeAngelsNetwork,Melbourne Cookie Company, Morlife, Carman’s Kitchen, LeReve,GoNatural,Avon,jarf&friendsfortheirgenerousdonations.
Easter 2014OnEasterSundaywedistributedEastergiftbagstofamilieson
Koalaward–thankyouverymuchtoeveryonewhodonated
Eastertreats,everyonelovedthem.Wegavethenurses
onKoalaandRosellawardEastergiftboxeswithdelicious
MelbourneCookieCompanycookiesandEastereggs.
It is difficult spending special occasions in hospital so we endeavour to spoil our in-hospital families on Australia Day,Easter,Mother’sDay,Father’sDayandChristmas.Wewouldn’tbeabletodothiswithoutthegenerosityofcompanies and individuals who donate items for us to give to our families at special times during the year. Here are some examples of our support team spreading some much-needed cheer which is always appreciated.
14
Left to right: Nurses Day cake; Seated massages; Nurses Afternoon Tea
International Nurses Day 2014InternationalNursesDayisanopportunitytocelebratenursesandtheircontributiontothehealthof society. It is celebrated around the world every May 12, the anniversary of Florence Nightingale’s birth.Eachyear,theInternationalCouncilofNurseschoosesathemeforInternationalNursesDaydiscussions.Thethemefor2014was:”Nurses:AForceforChange–Avitalresourceforhealth”.
To celebrate the occasion HeartKids provided a special afternoon tea with seated massages for the wonderful Koala ward and Rosella ward nurses and delicious cakes for the Cardiac Theatre Nurses, Specialist Nurses and Clinic Nurses.
HeartKids is constantly impressed with the nursing staff’s skills and commitment as they work with our children and families. THANK YOU to each and every one of you for making a difference in the lives of our heart children.
Introducing Dr Ari HortonThis is meant to be a blurb about me. But for me, it is always about the amazing people and families that I meet. Your children may see themselves as a patient, but I see them as normal kids, and will try to make their time and your experience as comfortable as possible whilst supporting all aspectsofyourchildren'shealth.I am Ari, the current Cardiology registrar on Koala Ward. I have been a doctor for six years and hope to continue my training in Cardiology
for many years to come. My special interest is in genetic heart diseases.I studied Medicine at Monash University in Melbourne but have been lucky enough to work in Australia, Canada and Nepal. My interests include cooking, travelling and scuba diving.Ifyoueverneedsomeonetolisten,letmeknow.Butdon'taskmetosing-you might cry from laughter!
...at The Royal Children's
IN HOSPITALA special hello and our very best wishes to all the heart children who have been in
hospital in the last three months.
RCH Morning TeasAll ward, ICU and outpatient families
are welcome to join us for morning tea, held on Tuesdays and Thursdays
from 10:30am - 12:00pm in the Parent Lounge on the 3rd Floor.
We look forward to seeing you there!Support at MonashHeartOur Family Support Coordinator
Sherrie McDonald visits the clinic on
Wednesdays 1.00pm - 4.00pm
Monash Children’s Clinic, Special Medicine
Centre (next to McCulloch House)
246 Clayton Road, Clayton
Jo - 39 Years ServiceIn May, Koala ward clerk Josephine Xerri celebrated39yearsworking at The Royal Children'sHospital."Jo Jo" goes out of her way to care for the children and families on the ward. Congratulations and thank you Josephine!
12 May 2014International Nurses Day
International Council of Nurses
NURSES: A FORCE FOR CHANGEA vital resource for health
15
Reflections
A Father's GriefLosingachildisundoubtedlyoneofthemostdifficultandtraumatic experiences that anyone could ever face, and research shows it holds greater risk factors than any other loss. It is life changing and it is devastating, and you never think it will happen to you; until it does. The pain is beyond anything you ever imagined; you hurt so intensely that you know you will never recover. And you never really do. A part of you dies with your child, and the person you once were, is no more. You just have to learn to ‘live with the pain’, and somehow to go on.
The grieving process varies for everyone whether they are male or female, just as we as individuals have different coping mechanisms and survival modes to get us through life; although generally males and females grieve differently. But are men the forgotten ones in all this pain and devastation?
In some ways the pain of loss of a child is harder for the fathers, which may be why on the outside the persona they are presenting is not a true reflection of their inner feelings. The mother carries the child, and that already creates a uniquely beautiful connection that a father cannot experience. Thus the misconception may then be that the father’s bond isn’t as strong, which leaves a man feeling very lonely when he loses a child.
After interviewing a number of dads, most felt like the first question people ask, after learning the news of a couple’s loss, is “How’s the mother coping?”. This is not to say that no one cares about the father, but instinctively, the mother is the first person we think of. Men may feel isolated and this can compound the already complex emotions they are experiencing.
Let’sfaceit,menaren’ttalkersatthebestoftimes;howoftendo you hear of a group of mates going out for a beer and talking about the emotional meltdown they had because they had a bad week? Whereas I can recall many an occasion sipping a cocktail and discussing the emotional upheaval of everyday things such as juggling work, kids, housework etc, only to be supported by words of love, wisdom and sympathy by my girlfriends, and plenty of teary hugs. When tragedy strikes, women find it easier to express themselves, and will process things by verbalising their feelings; hence the healing process has already begun. Men tend to internalise their feelings as they are hesitant to expose any emotional vulnerability.
Many men in our society also still feel the need to be self-contained and strong, possibly because of the stereotypes we have imbedded in us. They could feel pressured or a sense of duty to ‘fix’ the situation; thus they are left feeling as helpless as they do devastated. Their sense of frustration and powerlessness to remove the pain for their loved ones, can be confronting as they question their ability to protect their partner and their family. This can be destructive as they build a wall of silence around themselves.
Some men suppress their pain, or go through a delayed grieving process depending on the way the woman is coping with the loss. One man said, “If your wife is losing it, then you feel beholden to keep everything together, otherwise the rest of the family will fall apart”.
This delayed grief could then lead to a man either never really grieving in the way they need to, or they could always be grieving because they were unable to grieve at the beginning.All men grieve when someone they love dies, but if they are to heal, they must also mourn.
One father I spoke to said he remembers distinctly breaking down and crying when he was alone at a football match months after his daughter died.
“I had been looking after my wife and helping her deal with her grief, as she was a mess and I was the stronger one at the time. And then it all just built up and gushed out without warning. It was like I allowed myself to break down once I made sure she was okay.”
When a child dies, mothers find comfort in rituals or in keeping the child’s memory alive with such things as writing, songs, making special photo montages and spiritual ceremonies to mark special days; in fear that the world could ever forget their beautiful, precious child. To her, everyday and everything she does for the rest of her life is a reminder of her loss, and she wants to scream it out with gestures and relive her memories. Men generally do not have any inclination to communicate their emotions in such a way. But does this mean they care or hurt any less, or that their love for their child is not as strong? Absolutely not! Fathers miss their child as desperately as mothers do, even if they don’t display their grief in the same manner, and even if they don’t participate in the rituals.
Men often feel the need to be active in the face of grief, by throwing themselves into their work, exercise, chores, etc, in an attempt to distract themselves from their painful feelings. Practical things can provide emotional relief and self distraction from reality. Their effort attempts to keep the negative and painful from penetrating their soul. However this does not mean they are not feeling the same sense of loss and torment the mother is, in losing their child.
So even if we think our partners don’t show their feelings of hurt and pain like we do; even if they don’t cry when we do or talk about the child we lost like we do; even if they don’t partake in the ceremonies; it does not mean their hearts are not breaking and yearning for their child every day, as much as ours does.
Your way may be tears, cries, anguish, frustration and desperation, but his way may be private. There is no “right” way to mourn and men are not immune to feelings - their grief affects them as strongly as it does women. Simply put, I remember my husband saying to me, “Just because I don’t talk about our daughter as much as you do, it doesn’t mean I don’t feel the emotions you feel”. And he cries when he needs to, because it was his daughter that died too.
“He looked over at me from across the room, and although his eyes were dry and his thoughts unspoken, I could look into the depths of his soul and see the pain and the anguish behind the facade of bravery he was depicting. All I was thinking was that it was taking every bit of strength I had not to completely fall apart, and he was feeling the same; except that he was also trying to hold it together, so I wouldn’t have to.”
Written by Christina Georgiades
"Mourning is the outward expression of loss and grief. Mourning includes rituals and other actions that are specific to each person’s culture, personality, and religion."
"Grief is the constellation of internal thoughts and feelings we have when someone we love dies. Think of grief as the container. It holds your thoughts, feelings, and images of your experience when someone you love dies. In other words, grief is the internal meaning given to the experience of loss."
Heart Angel Remembrance
We remember these Heart Angels whose birth date or anniversary is in the Winter months.
Birth DatesZachBeadel5thJune2010
JessicaElHassan9thJune1993CocoDuChateau11thJune2011ThomasJones13thJune2008DylanGrilli15thJune1993
MakaylaCook18thJune2012WilliamFisher19thJune1999EmilyCole30thJune1987
OscarBatrouney1stJuly2009Alisha Woolley 1st July 2013CohenLewis7thJuly2007
Stephanie Williams 16th July 2013SummerSenior18thJuly2013CharliHartley20thJuly2009MargyKyberd22ndJuly1967
MatildaAnnieFarley27thJuly2011Jack Farley 5th August 2013CoreyLake7thAugust2000PaigeBerry9thAugust1995ArloDonnelly9thAugust2012KristenPotts10thAugust1997ErinnO'Brien14thAugust2005JacksonWalsh17thAugust2009
BenjaminLaMotta31stAugust2009
Anniversary DatesSarahInkster19thJune2007
OwenCrew26thJune2007
XavierSamu27thJune2012
CohenLewis10thJuly2007
Raphaela Perrin 10th July 2010
SummerSenior18thJuly2013
PaulLivingstone19thJuly1992
Avelynn Wood 20th July 2012
Makayla Cook 21st July 2012
KristenPotts23rdJuly2007
Rowan Seward 25th July 2013
MatildaAnnieFarley27thJuly2011
CharliHartley28thJuly2009
Jacob Holden 11th August 2013
ErinnO'Brien14thAugust2005
MargyKyberd15thAugust2009
ThomasJones19thAugust2011
William Fisher 23rd August 2003
EmilyCole26thAugust2006
BenjaminLaMotta31stAugust2009
Reflections
Thinking of YouOur thoughts and prayers are
with the families and friends of all
Heart Angels in their time of loss.
In loving memory of
Michael Meares
19.11.2007 - 13.06.2014
My silent childOur precious baby,Close to my heart
I'll keep you with me.An important job God has for you,
There is love to give,And work to do.
He needs an angel,Strong but small,
To shine light on manyAnd give love to all.
Before you go,I give you thisHalf my heart
And one last kiss.
We'll miss you dearlyThat we know,
But by God you were chosen,So to heaven, you must go.
Author Unknown
In loving memory of
Blaize Tyler-James Sherlock
Born 22.04.2014
Passed 05.05.2014
Rosella ward, RCH
Although you only lived for 13 days you stole our hearts.
My precious son you were taken too soon, you didn't
stay very long but just know we are all so proud of you and the fight you put up.
You tried so hard to stay here on earth. If love itself could have saved you, you
would never have died.
You will forever be loved and missed and never will you be forgotten.
R.I.P beautiful boy
17
Branch NewsHeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine and follow us on Facebook or watchtheEventsCalendaronourwebsiteforupcoming Catch-up dates:
http://heartkidsvictas.org.au/events/
Our Sincere Thanks....Two of our members have recently retired from being a Branch Coordinator. On behalf of all the families they have supported, we thank Amanda Riley for sharing the role at Burnie, and Sophie Werner for being available to help families in the LatrobeValleyforabout12years.We warmly welcome a new Traralgon Coordinator. Please read about her on this page and find her contact details on the back page.
Hi, my name is Christina. I am the
proud mother of seven children. My
youngest, Crystal, is my heart child.
ShewasbornwithHypoplasticLeft
HeartSyndrome(HLHS).
Crystal spent five weeks in ICU and
then several weeks in Koala ward. We
were then sent to accommodation
for the next five weeks until her next
operation. That went smoothly, so we
were then able to go home and finally
be a family. Crystal is doing all the
things a baby should be doing.
I was excited to be asked to be the
Branch Coordinator for the Traralgon
area. I am really looking forward to
meeting other HeartKid families.
Geelong Branch ActivitiesFebruary - Bunnings BBQ Our Bunnings BBQ fundraiser was held on the 22nd February at Bunnings Waurn Ponds. It was a very successful day making a profit of $2300. There were many volunteers to help and it was well supported by the local community.
Special thanks to Wayne, Jade, Shane, Aaron, Tina, Audrey, Tom, Robyn, Amy,Eileen,Cara,Jack,Paul,Kris,KerriforvolunteeringtheirtimeandtoBrumby'sBakeriesandHepburnSpringsDrinksfortheirdonations.
Written by Geelong Branch Coordinator, Libby Gibson
Easter Fun at GeelongOnMonday21stAprilwehadourannualGeelongEasterPicnicatLeopold'sGatewaySanctuary.Tenfamiliesenjoyedasausagesizzle,EastercraftsandanEasterEggHuntwithplentyofchocolate.Wefinished the day by feeding the ducks (now the most well-fed ducks inVictoria)!
June Catch-up
Traralgon
18
Tasmania NewsOnSunday27thAprilourNorthern Tasmanian families held a get-together at the Anzac Park playground in Ulverstone. The weather was picture perfect and the children enjoyed playing in the park. The big slide was a huge hit. The event was organised by ourDevonportCoordinatorClaireGluyasandourCEONorm Hutton and Support Manager Tracy Stanley flew over for the day. It was a great opportunity for families to chat to Norm and Tracy, to ask questions and learn about the plans to better support our Tasmanian families. A big thank you to everyone for attending.
Pakenham Catch-up
Branch Catch-ups Bundoora Disco
19
Sharpie's Charity ChallengeThe 2014 Sharpie’s Charity Challenge was the 10th and Final Challenge. The event was a great day and we were very lucky withtheweather.Everyonewhoparticipatedintheeventdida great job. The challenge this year combined elements of all previous challenges:
•onecanofbakedbeans
•rideoutto1000steps(approx.30km)
•1000stepstwice
•50pushups
•ridetoAlbertPark(approx.35km)
•50pushups
•runonelapofthelake(approx.5km)
•2kmswimatMSAC
•onebeerattheendtofinishwhereitallstarted!
The 2014 challenge raised $22,000 which was another brilliant achievement,nowbringingtheFoundation'stotalraisedtojustshyof$142,000!TheSharpie'sCharityChallengeFoundationhas supported HeartKids over the last five years, providing them with a portion of the amount raised each year which has now surpassed$70,000!
A big thanks goes out to all this year’s participants and helpers for making it such a memorable day. The funds this year were donated to HeartKids and The Alfred Hospital. We would also like to thank all our sponsors for supporting us this year and throughout all the challenges - without them the Foundation and funds raised would not be nearly as strong. Furthermore,
we would like to thank you, the public, for your donations this year and in the past, as without your support there certainly would not be a Foundation.
There are a few things in the works for the future, however the challenges have now finished and we are moving on to a new chapter in the Sharpie’s Charity Challenge Foundation world! Keep your eyes open for what we will be doing in the future, where many more of you can partake.
Friday9thMaysawtheRotaryClubsof Tullamarine and Keilor once again conduct their Annual HeartKids Night of Nights fundraiser. In its ninth year, the event raises funds for HeartKids Victoria/Tasmania, with every dollar goingtothecharity.Despitebeingdown in numbers compared with previous years, the end result was beyond expectation which resulted in a magnificent night and funds raised in excess of $30,000. Chairman of the organising committee, Rotarian Anthony Flapper (also a Board memberofHeartKidsVic/Tas)openedproceedings with a welcome and explanation as to the reason for the event.ItaliantenorLinoDelGuidicetook over as MC and included a special performance of an Italian operatic song that was a result of the live auction. We were privileged to have HeartKids parent Samantha McGowan share her story about her daughter Scarlett’s fightwithCHD.Shewassupportedbyseveral other HeartKids parents and family members, as well as HeartKids Vic/Tas staff members and board members.Great food and wine was enjoyed and thanks must go the Ultima Function Centre for their ongoing support of
this event. The grand ballroom looked amazing.EntertainerforthenightwasMark Andrew, a leading tribute artist, who showed us many of his talents bringingoutDeanMartin,BuddyHolly,Tom Jones, Austin Powers and the one andonlyElvis.Bytheendofthenighthe had many people up and dancing and his charm as Austin Powers had a few of the girls getting a bit excited.Throughout the night, balloon raffles took place, silent auctions created bidding interest and the live auctions saw some fierce bidding which meant more dollars being raised. The main items of the live auction were a ride in LindsayFox’sprivatehelicopterforsixpeopleoverthebayandCBD,andafullycateredcorporateboxatEtihadforany game this season. Between them theyfetched$8000andwethankbothwinning bidders for their support in the bidding wars.All in all a great night was had and an amazing result given the numbers present. Many thanks go to the organising committee for once again putting on a wonderful show and next year we hope to have more people there supporting a wonderful cause as well as having a sensational and enjoyable evening.
HeartKids Night of Nights
20
ThesecondMakaylaCook’sCharityGolfDaywasheldonGoodFriday2014atTheDrouinGolf&CountryClub.Thedaywasheldinmemoryofourbeautifulbaby Makayla, who passed away at just 33 days young from a complex congenital heart defect. One hundred and eighty golfers braved the cold and wet conditions for a fun day of golf. There were two barbeques on the course which were very kindly run by the Waverley and Berwick Kiwanis clubs, while drinks carts regularly served thirsty golfers on the course all day. Golf was followed by food, presentations, a live auction and raffle, and live music back in the club rooms. The day was once again a huge success and we were able toraiseatotalof$29,510forHeartKidsVictoria/Tasmania.Major sponsors of the day included Stuart Cook, JHJ Creative Jewellery, Robertson Wouters, KPR Financial and Marketing Services, Andrew Patterson and EbonyPrice.Wealsohadahugeamountofsupportwithverygenerousdonationsmade in the way of the raffle and auction items, as well as prizes for the golf competition. We are so proud and humbled to have held such a successful event in memory of our baby Makayla, and to support HeartKids Victoria/Tasmania. We look forward toorganisinganotherfantasticMakaylaCook’sCharityGolfDayin2015.Leon and Jackie Cook
Makayla Cook's Charity Golf Day
Makayla Sue Cook 18/06/12 – 21/07/12
A Night for TinaA'NightforTina'MovienightwasheldonSaturday7thJune.Friends,familyandthecommunity of Benalla came together in memory of Tina Nelson as part of a movie night fundraiser for HeartKids. Tina passed away on 3 March 2013 from Hypertrophic Cardiomyopathy and since then her family and friends have raised over $32,000 for HeartKids.This year, in addition to the movie night, an online auction was also held and the event raised $5,200. "We are elated with the generosity and support of the community," exclaimedTina'shusbandMatt."Tinawassopassionate about HeartKids and, as both of our boys have the same condition as Tina, we want to continue to raise money for this important organisation. We are also comforted that, an amazing person in life, Tina continues to help so many people since her passing".http://www.inmemoryoftina.com/
21
Aussie Farmers Direct
2ds creative
Alexandra Foodworks
Ample Café and Bar
ANZDocklands
Austin, Monica
Bainbridge, Prudonce
BalfourBusLines
BardotPtyLtd
Biggin & Scott
Blackmore, Sarah
Blyth,Emma
Borg Manufacturing
Braico, Paul
Campbell,Emmeline
Catalan, Meagan
Cater-Maggs, Shae
City of Greater Bendigo
Coady, Jay
Cole, Tracy
Commonwealth Bank Staff Social & Charity Club Vic
Compston, Julie-anne
Cook,Jackie&Leon
Cool, Alistair
Coulston,Lynette
Cradle Coast Sports & Events
DepartmentofJustice
Dodgson,Norman
Drew,Tammy
D'Silva,Christine
Ebery,Kathryn
EpicPhotography
Evans,Mick
Featherston, Kevin & Beryl
Fifer'sBuildingSupplies
Flapper, Anthony
Flaver Café
Giblin,Lisa
Godfrey, Adrian
Gordon-Cooke,Diane
Grimbos, Anita
Gruber, Maria
Holman, Angela
HumeRegionRDV
JHJ Creative Jewellery
Johnstone, Tanya
Kay,David
Kay-Class, Teena
KeeferBros(Aust)PtyLtd
King,Denis&Anne
Kiwanis Club of Shepparton
LittleRichard
Lupton,Louise
LynMarcTextiles
Maciula, Natalie
Magistrates Court of Victoria
MakaylaCook'sCharityGolfDay
Mason, Kellie
Mastek, Aneta
Mazenod College
Mekhael,Emmanuel
Moran, John
Moran,Lyn
Mortgage Choice
Mueller, Susan
Murtagh,Elise
Nelson, Matt
Nester, Sophie
Novello, Matthew
Obieglo, Victoria
Ole,Erin
Parkville Store
Paszkiewicz,Daniela
Point Cook Netball Club
Poppy & Miff Jewellery
Price, Matthew
Pryce,David&Sonya
Quinane, Bianca
Ray, Paul
Rotary Club of Hazelwood
Rotary Club of Keilor
Rotary Club of Tullamarine
Scott, Michelle
Shamrock Hotel
Sharp, Joshua
Sharpies Charity Challenge Foundation
Signwave
Smith, Alan
SpecsaversPtyLtd
Stanley, Kiana
Stewart,Lesley
Tang, Peter & Joyce
TasTAFEClientServices
Terrill, Mark
The Art Cabriolet
The Australian Cake Angels Network
TheRoseLifestyleVillage
Thomas Carr College
Thomas,Fr.Donald
Wedderburn Community College
Wertheimer, John
ZTransportGroup
MemorialDonationsforBevan Vanderwert
Thank you for your recent gifts...
Financial contributions over $500 are acknowledged in this column.
Heart Kids Victoria have teamed up with Aussie Farmers Direct!
Shop with them and they’ll support our fundraising effort.
Take up the introductory offer and help Heart Kids Vic reach their fundraising goals.
AussieFarmers.com.au/Fundraisingoffer
What’sNext?
AussieFarmers.com.au/Fundraising
Entertainment Book
We are selling the new 2014 - 2015 Entertainment™Booksasafund-raiser
andthisyearyouhaveachoice–the
Entertainment™BookortheNEWEntertainment™DigitalMembership!
The cost of each is $65. Please support us and order on-line https://www.entertainmentbook.com.au/orderbooks/180y947
22
Sponsors and Supporters
Victorian Partners:
National Supporters:
Founding Sponsor
Principal Partner
Major Partners
Foundation Partner
Corporate Supporters
23
Diary DatesAugust/September - Cuppa for HeartKids
Saturday2August-HKEducationDay
Saturday2August-BallaratBushDanc
e
Sun3August-ANZFontanRegistryEduc'nDay
Friday8August-'OffTheCuff'Luncheo
n
Thursday 21 August - Circus Quirkus Bendigo
Sunday 24 August - Circus Quirkus Melbourne
Sunday24August-'MagnificentMiss'
Thurs18September-'Hearts,Hats&Hooves'
Weekend19-21September-FamilyCamp
Saturday11October-BoxHillTrainsDay
Sunday 12 October - Melbourne Marathon
Sunday26October-Hoffy'sRainbowFunRun
Saturday8November-24HourBikeRide
Sunday9November-FunFlight
For more about these events check inside or go
to www.heartkidsvictas.org.au
Contact DetailsBallarat RohiniDobell&AlanSmith 0407851648 [email protected]
Bendigo Natasha Prendergast (03)54418262or0421590169 [email protected]
Cobram BiancaQuinane0419674408 [email protected]
Echuca/Moama TraceyHard0438962056 [email protected]
Geelong LibbyGibson(03)52502439 0411057905 [email protected]
Horsham GaynorBaker(03)[email protected]
Kyneton LaurenRoberts(03)54272696 [email protected]
Mildura FionaDowie0438396790 [email protected]
Portland KerrySluggett(03)55232503 0418312320 [email protected]
Shepparton Cheryl Alexander (03)58254005 [email protected]
South Gippsland KerrieDisney(03)51825531 0409950608 [email protected]
Stawell LeanneAmarant (03)53582945or0419864412 [email protected]
MELBOURNEMETROBRANCHES
Bayside Cassie Clarke 0499741116 [email protected]
EastBentleigh Maggie Stavrou (03)95637133 [email protected]
Bundoora AmyHeafield0421518366 [email protected]
Dandenong Lucy(Fatima)Hussain 0430738820
Melton LaurenTyrrell0424594757 [email protected]
Pakenham Joanne Arrowsmith (03)59677083 [email protected]
Point Cook KarenHoward0413023557 [email protected]
Tullamarine AdeleLuca0408312662 [email protected]
Wantirna JanitaFelici0422976024 [email protected]
REGIONALBRANCHESVICTORIA
Albury/Wodonga AprilSchubert0407551967 (02)60566448 [email protected]
Bairnsdale CarolineFoard0438928821 [email protected]
ARN:A0021470B ABN:16336986918
VISIT USSuite 310 / 55 Flemington Road North Melbourne 3051
HeartKids Vic IncCONTACT USPOBox803 Parkville Victoria 3052
P: (03) 9329 0446
Facebook: HeartKids Victoria/Tasmania
www.heartkidsvictas.org.au
Traralgon Chrissy Ades0400857813 [email protected]
Wangaratta LisaDekeling0421655636 &ShaneHack0488221184 [email protected]
Wonthaggi ErinHowell0431702863 [email protected]
TASMANIA
Burnie/Devonport [email protected]
Hobart PaulHyland(03)62478435 0418561504 [email protected]
Launceston KylieSmith(03)63936240 0448983587 [email protected]
SPECIALINTERESTGROUPS
22q11 AudreyCater(03)93947965 0420500905 [email protected]
BEREAVEDFAMILIESEMAILSUPPORT http://www.hearts-of-hope.org/support/bereavment/intro.htm
CARDIOMYOPATHYASSNofAUST. Website: www.cmaa.org.au/
DOWNSYNDROME [email protected]
EBSTEIN’SANOMALY KathySims(03)58311110 [email protected]
hearts4heart - Support for Adults withHeartDisease Tanya Hall 0426 240 636 [email protected] hearts4heart.net.au
HYPOPLASTICLEFTHEART SYNDROME &SIMILARCONDITIONS www.hearts-of-hope.org LeanneAmarant(Victoria) (03)53582945 [email protected]
CsabaOvari(Tasmania) (03)62298169 [email protected]
KABUKISYNDROME Stacey McKiernan (03)52751542 [email protected] Website: www.sakks.org
KAWASAKIDISEASE ShirleyMates(03)98941257 [email protected] Website: www.kdfoundation.org.au
LONGQTSYNDROME(LQTS) SherrieMcDonald0431544510 [email protected] www.sads.org.au or www.sads.org.uk/
MULTIPLEBIRTHS AprilSchubert0407551967 (02)60566448 [email protected]
MUSLIMFAMILIES Lucy(Fatima)Hussain 0430738820
OVER18’s ErinCervelli(03)95139030
PACEMAKERS MandyTichelaar(03)97286984