HeartBeat - 2013Qld Annual Magazine

2 0 1 3 q l d a n n ua l m ag a z i n e

heart beat

Mending hearts...and more

Ideas to help keep you occupied in hospital, the people behind the

scenes, food, travel and upcoming events – it’s all in here!

HearT SonGS From HeartKid to international

country music and reality TV star – we speak to Mark O’Shea

in Her WordS Faced with her daughter’s open-heart surgery, we hear how one mother got

through the most trying days

contents

heartbeat magazine 2013 03

Please note this magazine is fully protected by copyright and all enquiries should be directed to heartKids CeO anne bannister for written permission to reproduce any material in full or in part. the publisher believes all information to be true and correct at time of printing. editorial published in heartbeat magazine is not to be construed as medical advice and readers are advised to consult their medical practitioners for advice. While every care has been taken in the preparation of heartbeat magazine, no liability can be accepted for errors or omissions.

Publisher heartKids Qld www.heartkidsqld.org.au Editor belinda glindemann, belle Pr www.bellepr.com

Design Vanessa russell, raspberry Creative www.raspberrycreative.com.au

Photography Dale haberfield, Wendy Chung Contributors anne bannister, rachael Stecher, matt moran

Cover brisbane-based heartKid milla Stecher, 3, just 11 days post-op after

open-heart surgery. Photo by Dale haberfield

of millbrook Studio

Welcome HeartKids Qld CEO Anne Bannister 04

Calendar What’s on in the world of HeartKids Qld 07

Songs from the heart The HeartKid from Dalby is all grown up 08

All heart Add a little ‘heart’ to your life 11

He’s a cut above Meet Nelson Alphonso 12

Lending a hand Meet our Family Support team members 14

Familiar face Meet Karen Eagleson 15

Broken-hearted beauties The HeartKids behind the organisation 16

In a mother’s words Diary of an open-heart surgery 18

Putting the ‘fun’ in fundraising How you can help 21

Making a difference We ask the questions, they share their answers 22

Starlight, star bright In memory of our Heart Angels 25

Things to do in hospital Boredom-busting ideas 26

Food Eat your heart out, with Matt Moran 28

Travel Recharge the family’s batteries 30

The year that was 2012 in review 32

Directory Add these useful numbers to your phone 34

contents

welcome

HeartKids Queensland Inc Postal address PO Box 599, Coorparoo Qld 4151 Phone 07 3847 7552 Fax 07 3847 7551ABN 83 989 125 067 Please note: All donations of $2 or more are tax deductible

Please forward any HeartBeat magazine queries or feedback to Magazine enquiries, HeartKids Qld, PO Box 599, Coorparoo Qld 4151 or email your suggestions to [email protected]

To view the HeartKids Qld Privacy Statement, refer to the “Privacy Policy” section at www.heartkidsqld.org.au

hello and welcome to our first heartkids qld annual magazine!

connect with us F ind out what’s going on at Hear tKids Qld via our websi te www.hear tkidsqld.org.au or scan the QR code (lef t) with your phone to be taken s traight to the s i te. We are also on Facebook at www.facebook.com/Hear tKidsQld and Twit ter at @Hear tKidsQld

Anne Bannister CEO HeartKids Qld

We have created this magazine as an annual publication for our HeartKids families, sponsors, fundraisers and volunteers. It is an opportunity for us to say a heartfelt thanks to everyone who supports the work we do here at HeartKids Queensland and to bring you relevant news and stories of interest – stories from the heart. For some of our readers, this may be your first interaction with HeartKids, as you may have just learned that your child has a heart defect. We want you to know first and foremost that you are not alone. HeartKids has been supporting Queensland families affected by childhood heart disease (CHD) since 1984. We have a range of support programs to help you, your HeartKid and your family throughout your CHD journey. We hope this magazine brings you hope and comfort.

I wish to thank the many people who have contributed to the launch of this publication – our Board of Directors, our operational team, our volunteers, our corporate sponsors and supporters, the clinical teams at the Mater Children’s Hospital and Qld Paediatric Cardiac Services and our members. This magazine is dedicated to the four Australian children who sadly this week will die as a result of CHD. They and their families are my inspiration for working with HeartKids, so that we may create big bright futures for little broken hearts.

Best wishes,

Family Support Manager Angela Richardson, [email protected] Family Support Coordinator Andrea Hyde, [email protected] Events and Marketing Manager Melissa Simpson, [email protected] Administration Manager Rachael Stecher, [email protected]

meet the qld teamPH

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04 HeARTBeAT MAgAzIne 2013

$1 MILLION RAISED FOR HEARTKIDS!

From the bottom of our hearts, thank you for helping us reach

this amazing milestone!


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland”.

“Holland?!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place,

full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and you

begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they’re all bragging about what

a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away, because the loss of that

dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be

free to enjoy the very special, the very lovely things about Holland.

JOURNEY THROUGH HEARTACHE

For those parents new to the wor ld of chi ldhood hear t disease, you may find solace in

these words as you travel the road that al l other Hear tKid parents have travel led before you

WORDS: EMILY PERL KINGSLEY, 1987

Hear tK ids Qld had a whale of a t ime celebrat ing our member s and get t ing our message out in to the publ ic las t year and 2013 i s sha ping up to be another cracker. Here’s some

of what we are up to (use the QR codes prov ided to access more in fo)

wHat’s instoRe foR 2013


MAY 17BRONCOS GAME DAY

The Mended Hearts team (20 HeartKids, aged 5-10) will take to the Suncorp Stadium field at half time (Broncos vs Titans).

JUL 3

Apr 23

AUg

HEARtKiDS HAMiltON iSlAND GOlf DAY

This annual event is played in the picturesque Whitsundays.

MArBRONCOS CAMPAiGN lAUNCH

HeartKids Qld will again partner with the NRMA Brisbane Broncos for their 2013 season. Members can look forward to family events and media activities all helping to promote HeartKids Qld.

CANNONBAll RiDE

This premium off-road motorcycle experience will run from Boonah, Qld, to the Hunter Valley, NSW, and see 2500km travelled in 12 days. HKQ is the official beneficiary of this full-throttle charity event.

MAY 5GOlD COASt BUllEtiN fUN RUN

Some 25 HeartKids Heroes will have a gold entry start in the event while raising money for HeartKids Qld.

CUPPA fOR HEARtKiDS

During Aug and Sept we invite the community to host morning teas to raise funds and aware-ness for HeartKids. Scan the QR code for more.

NOVtOY DRivE/fUN fliGHt

We will call for donations of toys for under our hospital Christmas tree (see QR code) and will also hold our Fun Flight at RAAF, Amberley.

sept fAMilY CAMP

Family Camp provides an opportunity for our Heart-Kids and their families to meet other families affected by CHD, participate in some activities and ultimately just have fun as a family. Date is TBC.

MAr - Apr

JUL-AUg

sept-Oct

NOV-dec

MAY- JUN

NOV 3 decNOOSA tRiAtHlON

The HKQ team raised $75,000+ in 2012. This year we aim to better that great tally. Funds raised go to our accommoda-tion support program for regional families requiring services in Brisbane.

JUN 16CitY tO SOUtH

Twenty HeartKids Heroes will pull on their running shoes, raising funds and awareness for HKQ. Scan the QR code for more info or to register.

septBRiDGE tO BRiSBANE

Join in the fun as the HKQ team competes in this iconic event. Walk for fun or run to compete. For more, scan the QR code.

OctCORPORAtE CHARitYCHRiStMAS CARDS

If your organisation orders cards for clients please consider our charity greeting cards as a percent-age of each sale goes to HeartKids Qld. Cards go on sale this month.

CHRiStMAS PARtY

This event is truly the highlight of our year. The party is always a crowd pleaser with more than 300 members expected to enjoy a great day out.

ANNUAl GENERAl MEEtiNG We’d love to see as many of you there as possible!

08 heartbeat magazine 2013

Mark O’Shea. Do you know the name? If not, let us tell you that he is an award-winning Aussie country music performer, now based in Nashville, Tennessee, who mixes regularly with the cream of international country music. He’s living his passion for music while working all around the world. He’s a reality television star, a husband and a father. And Mark is an adult HeartKid.

Born in Dalby in the Darling Downs some 200km west of Brisbane, Mark arrived into the world suffering Tetralogy of Falott – one of the most common cyanotic heart defects, generally referred to as TOFs. In that era in the late 1970s, correcting TOFs traditionally involved a three-stage process with surgeries required just after the baby’s birth, again at age 7 or 8 years and finally at around age 15. Mark, however, was otherwise born a “big fat healthy baby” and was therefore a prime candidate to undergo the then-new procedure combining that three-stage process into one surgery. So, at age six months, he was one of the first babies in the Southern Hemisphere to undergo the radical new procedure. In what was surely an early indication of Mark’s impending stardom, the surgery saw baby Mark featured on the front page of The Courier-Mail newspaper under the headline “Who’s blue? Not Mark” (see photo on Page 10).

Mark is the youngest of nine children. While he and his siblings have all grown up to work in completely different fields, including law, teaching, physiotherapy and retail (in the family business selling electrical goods in Dalby and Gundiwindi), Mark distinctly remembers his brothers’ and sisters’ shared love of music throughout their early years. While Mark says TOFs didn’t stop him from doing much as a young child, it was during his time in a “very rugby-focussed” boarding school in Toowoomba that he remembers his heart condition made him ‘different’.

“Football was such a big thing at the school. My mum was particularly protective of me,” he recalls. “It was challenging at times, not being involved in footy. I remember being left behind for away games. It meant I became part of a different social crowd.”

But when life hands you lemons, so you must learn to make lemonade.

“That’s when I really latched on to music. It was these experiences that crafted me into the artist I am today.

“When you look at it like that, TOFs has had a positive effect on my life.”

While his first musical instrument was the piano, taught to him by nuns at the local Dalby school, he quickly learned to play the guitar. And play it well. Mark won the Gympie Music Muster talent quest as a teenager which lead him to signing his first record deal with ABC/EMI at age 17.

“As a kid I thought I was going to be a lawyer and even got into uni to study law. But I chose to be a slave to rock ’n roll instead,” he laughs.

Through that first record deal, Mark saw “a little bit of success”. His debut album earned him two Golden Guitar awards from the Country Music Association of Australia including Best New Talent in 1996 and Best Video in 1997 but he “struggled with the confines of country music in Australia”. His was more of a contemporary country music feel, way before the Shania Twains and those Kasey Chambers of the world brought popularity to the same genre. In a natural progression, Mark started a band called Zinc with one of his brothers and a friend from Melbourne. Their pop-rock-orientated sound scored them a record deal in Los Angeles.

“We had a hit song in Australia for about two minutes,” Mark laughs, modestly. The song, The Morning After, reached No. 22 on the ARIA charts in 2004.

If you have a newly diagnosed Hear tKid and are feeling as though life has handed you lemons, take a leaf out of Mark O’Shea’s book. This adult Hear tKid has turned his

lemons into a tall glass of sweet, sweet lemonade. Here’s cheers to you, Mark

WORDS: BelinDa glinDemann

SOngS frOM THe HearT


> Continued on page 10

One fOr YOUO’SHea’S laTeST albUM One + One, feaTUreS a TraCK dedICaTed TO HearTKIdS Qld. IT debUTed aT nO.3 On THe arIa COUnTrY CHarTS. geT YOUr COpY aT Jb HI-fI, SanITY, bIg w Or On ITUneS


web: S tay in touch wi th Hear tK ids Qld ambassador s Mar k and Jay O’Shea v ia the i r Facebook page and webs i te . Vi s i t www. therealoshea.com and www. facebook.com/therealoshea

While the group parted ways, within a few years Mark would be touring with United States celeb musician Ronn Moss, who may be better known among the female population as lead character Ridge from daytime soapie The Bold and the Beautiful. Mark even had one of his songs included on one of Ronn’s albums. Could life be any more awesome for the HeartKid from Dalby? Short answer – yes.

When Mark was 19, he met fellow Aussie muso Jay Smith. They shared a love for music and eventually also a love for one another. However, their relationship was long distance for some time with the pair living separately in LA and London as they sought success for their respective individual musical careers. But the relationship was meant to be. In fact, two days before the interview for this magazine article, Mark and Jay celebrated eight years of wedded bliss (and some 16 years of togetherness). It’s enough to make you want to write a love song and sing it with your wife, right? Mark says it took him and Jay many years of casual gigging together to actually realise they had formed a duo.

“In the early days we were both very headstrong with our ideas. We tried to write songs together but didn’t always agree,” Mark says. “As we got older, we got more mature about it and are now able to write together – as long as we have a third person as referee!”

To add icing to the marital cake, Mark and Jay are proud parents to toddler daughter Finley and, in breaking news, also have another baby on the way (due in May, 2013). Mark says that while Finley was born free of any congenital heart defect and “perfect in every way”, they will closely monitor the unborn baby’s development in utero for any

signs of its father’s hereditary heart condition.

Based in Nashville, Tennessee, for the best part of the past

six years and enjoying a stellar musical career as the duo

O’Shea (for the record, their debut album Mr and Mrs

cracked Top 5 on the ARIA charts last year and they’ve

enjoyed four consecutive No. 1 singles from the album on

Australia’s Country Music Channel charts), the pair are

also television stars. Of some 6000 duos to audition for the

2009 reality TV show Can You Duet (a show that sought out

America’s next star country music duo) O’Shea finished

fifth. Mark said some 2 million people tuned in each week

and the show screened for two months on US TV. While fifth

wasn’t an outright win, their ‘15 minutes of fame’ landed

O’Shea an even sweeter victory – their own reality TV show,

O’Shea USA, which screens on the Country Music Channel.

Most recently, O’Shea invited a handful of HeartKids

to appear in the video for the single Thank You Angels

from their latest album, One + One. It’s a song about the

everyday ‘angels’ whose job it is to selflessly help others.

O’Shea has dedicated it to HeartKids Qld as Mark’s way of

saying a heartfelt thankyou. You can watch the video at

www.therealoshea.com/video

While TOFs played a big role in his early years, Mark admits

that he has experienced no problems with the heart

condition throughout his adult life. He did, however, have

to undergo a second open-heart surgery as an adult in

Nashville two years ago to receive a new pulmonary valve.

But he’s bounced back better and stronger than ever.

If you know a newly diagnosed HeartKid who feels as though their condition will hold them back in life, please re-tell this story of lemons and lemonade and a boy named Mark from Dalby.

> Continued from page 09

From left, Mark as a baby on the front page of The Courier-Mail in 1977, Jay and baby Finley, O’Shea onstage doing what they do best

Al l Hear tK ids fami l ies are bonded by one th ing – the hear t . Why not sur round your se l f w i th products l ike these that remind you how specia l

your Hear tK id i s whi le a lso br inging some subt le love in to your l i fe

All HeArt

stockists 1. Freckleberry choc heart, $4 www.childrensdept.com.au 2. The Shape of my Love children’s book, $24.99 www.allenandunwin.com 3. Stamp set, $24.95 www.kikki-k.com 4. Organic cotton tote, $49.95 www.bozandlove.com 5. Gel pen, $4.95 www.kikki-k.com 6. Mimco Mayhem heart clutch, $149 www.mimco.com.au 7. Olive & Joy reversible diamond heart linen cushion cover (available in black or white print), $79 www.oliveandjoy.com 8. Kimochis nesting heart, $24.95 www.kimochis.com.au 9. Wooden block set, $14.95 www.kikki-k.com 10. Smallprint 20” cable necklace with three descending pendants featuring your children’s fingerprints, $540 www.smallprint.com 11. Fair trade Kisii soap stone hearts from Kenya, various sizes and prices, available at Mater Pharmacies including Level 2, Mater Children’s Hospital Brisbane


11.

10.

9.

7

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1.

3.

2.

Nelson Alphonso is a very modest man with a very important job.

As the Queensland Paediatric Cardiac Service’s director of surgery, Nelson is one of just 10 pediatric cardiac surgeons in the country and one of just three in Brisbane mending the broken hearts of little Queensland HeartKids. But don’t try to heap praise on this man’s lifesaving work.

“I’m just the product of the people who train me,” Nelson says honestly. “It’s simply the job I know and what I’m trained to do.”

And it’s a job he says he thoroughly enjoys. On any given day, Nelson could be operating on a 600-700g premature baby. Its heart, he says, is about the size of that baby’s tiny fist – or a walnut.

“Paediatric cardiac surgery is very challenging, very rewarding and the parents are so very grateful,” he says. “But there is no speciality under such scrutiny as paediatric cardiac surgery.”

Nelson was born in Bombay, India. He studied medicine and completed his general surgery training there before embarking on a worldwide working adventure. Since 1995, he has lived and worked in New York, London, Melbourne, San Francisco and Liverpool before returning to Australia and making Brisbane his home in June last year.

“We loved our time previously in Australia so Brisbane was a very attractive opportunity,” Nelson explained. “The weather here is very similar to India.”

Nelson, 45, is dad to a seven-year-old daughter (“going on 17,” he laughs)

Whatever your chosen

career, We all play a

unique and important role

in society. But imagine if

your joB involved l i terally

holding a child’s l ife in

your hands on a regular

Basis . noW that is a role

for someone special…

WORDS: Bel inDa Gl inDemann

he’s A CUT ABOVe

web: have you purchased your hear tK ids merchandise? There are t - sh i r t s , umbrel las , hats , ca ps , pens , la pel p ins and more. Vis i t www.hear tk idsqld.org.au and c l ick on ‘how you can help us ’


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Pure silver jewellery that captures special moments in

time and keeps your special HeartKid with you all day long

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smallprint ANZ

heart beads heart beads heLP eNrICh the eXPerIeNCe OF

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and a three-year-old son. Funnily enough, his wife is an adult cardiac theatre nurse.

There must be interesting and ‘heartfelt’ conversation over the dinner table between these two, right?

“We don’t talk about work at home,” Nelson says. “We are too busy getting a word in around the kids anyway!”

While Nelson’s work keeps him busy for long hours each day caring for the lives of other people’s children, nothing is more important to him than juggling commitments to maximize time with his own children. His is an extraordinary job and he still battles for work/life balance just like the small business owners and tradespeople and office workers and corporate high flyers.

“It is a real effort. You have to be organised and have realistic expectations.”

While Nelson is relatively new to Brisbane, he has been warmly accepted by HeartKids Qld. Nelson was one of the guest speakers at the recent one-day HeartKids Qld ‘Hearts and Minds’ seminar, for families affected by childhood heart disease.

“It’s a great organisation – very, very helpful,” he says. “In my position, it’s very easy to get tunnel vision by being at the hospital and only hearing the professional opinions. It’s nice to have a different, more personal opinion (via HeartKids) as well.”



Have you met a

HeartKids Qld

Family support team

member yet? tHey

are Knowledgeable

and supportive and

tHey will probably

be some oF tHe best

Fr iends you’ll maKe

DiD you know? The Family Support team hosts morning tea for HeartKids and their families every Tuesday and Thursday at 8 East Ward, Mater Children’s Hospital, from 10am. Come along and make some new, likeminded friends?

Angela Richardson Family Support manager (above right)

I began working for HeartKids Qld in 2011, delivering both in- and out-of-hospital support and programs to improve the lives of those affected by childhood heart disease. However, my personal HeartKids journey started when our son Kye was diagnosed with CHD at my 20-week pregnancy scan. After two healthy babies it was the last news we expected to hear. He has HRHS, TGA, ASD, VSD and a straddling TV valve. When Kye was nine months old, our cardiologist told us “I’m sorry there is nothing more we can do...” and he was given nine months to live. It was devastating news, but we never gave up. Kye started Year 2 this year and has never looked better. Working closely with families in the 8 East Ward and at regional clinics constantly reminds me of the strength and tenacity our HeartKids have. I am often invited to support parents during private moments and times of great stress, which is humbling and an honour. To provide support and practical information to these families gives me a sense of satisfaction few people could say they get out of their jobs.

Andrea Hyde Family Support coordinator (above left)

My role is to support families going through their HeartKid’s operation/s, recovery, clinics and more. My HeartKids journey started with my son, Kellin, who had his first open-heart surgery for HLHS at three days of age in 2005. Since then, he’s had numerous surgeries, been on life support, lived for five months with a Berlin (artificial) heart and had a heart transplant, all of which required us to travel back and forth from our home on the Gold Coast to Melbourne, sometimes for long stints. I don’t know what I would have done without Tracy and Sherie from HeartKids Vic. They gave me so much hope. It was such a lonely time, but these two would stand beside me – not saying any words sometimes – just being there for me. There were fun times too when we would share morning tea and a laugh. Kellin is now a happy Year 2 student. My role gives me a way to return all the good karma I received in Melbourne. I am blessed to be invited by HeartKids’ families to be with them in the hard times.

LENDING A HAND

Twenty years in the one job is a monumental achievement. It shows loyalty, dedication, commitment and, simply, that you are good at what you do. This is Karen Eagleson to a tee. As one of a team of Cardiac Care coordinators within the Queensland Paediatric Cardiac Service, Karen will clock up 20 years of service this year. In that time, Karen has followed hundreds of HeartKids through their treatments, many of whom she met as newborns and who have since transitioned into the adult cardiac service.

As a Cardiac Care coordinator, Karen’s job is a varied one. She plays the middleman between HeartKids’ families and the doctors or surgeons, provides support and education and, basically, is a familiar face to those parents in need. As it’s a statewide service, Karen can be found in regular regional outreach clinics, or at the other end of the telephone going through troubleshooting strategies with a parent. She works on the ward, helping HeartKids and their families adjust to hospital life, and she also works in the antenatal clinic with pregnant mums.

“I have some really happy moments – like when a newborn has its first bath, or when they are ready to leave the hospital to go home,” Karen says. “But there are very sad times as well.”

Karen says she has especially enjoyed her relationship with HeartKids Qld, sharing a mutual desire with the organisation to support affected families.

“I can’t pretend to know what it is like to be the mum of a HeartKid, even though I have done this job for a long time, and that is why the role of HeartKids is so important.

“The health professionals provide one side of the story – factual information at diagnosis and on prognosis, for example. And then HeartKids provides a different layer of support. As parents of HeartKids, they have personally walked the path.”

Familiar Face

For most Queensland

HeartKids, cHances are

you would Have met Karen

eagleson. sHe’s tHat warm

and welcoming Face tHat

maKes Hospital stays and

treatment all tHe more

bearable. and sHe’s been

doing it For 20 years

WORDS: Bel inDa Gl inDemann


DiD you know? Workplace giving is a simple, tax efficient way to donate to Hear tKids Qld. Donations are made from pre-tax pay, so the tax deduction is immediate and guaranteed. Phone 07 3847 7552 for details?

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We couldn’ t le t our f i r s t edi t ion of Hear tBeat magaz ine go by wi thout featur ing some of the many v ibrant faces that make th i s organisat ion what i t i s . We wish you,

and al l our Hear tK ids , good heal th and ha ppiness in 2013!

BROKEN-HEARTED BEAUTIES

Shaelea, 9 - Deception Bay

Mitral valve replacement

Scott, 4 - Mackay

ASD, SVT, COA

Saffy, 7 - Parkinson

Complete heart blockage, leaking valve

Regan, 7 - Toowoomba PDA (and sibling of a Heart Angel)

Oscar, 7 - Lawnton

Aortic stenosis, Bicuspid valve

Finn, 6 - The GapPDA

Tyson, 7 - Daintree

HLHS

Daniel, 1 - Augustine HeightsHLHS


web: To stay up to date with Hear tKids Qld make sure you subscribe to our monthly email newsletter at www.hear tkidsqld.org.au/whats-on/past-newsletters. You can also read our past newsletters on this page

Koby, 1

- Sunsh

ine Coast

AP window

April, 9 - Cleveland

TOFs, DORV

Mason, 9 - Woody PointBSD, PDA, Truncus arteriosis

Summer, 7 - Sunshine Coast

HLHS

Eli, 9 - W

akerley

Cardiomyopathy

Jack, 7 - CarindaleTOFs, Pulmonary stenosis

Jensen, 5 - Sunshine Coast

TGA

Christopher, 6 - Logan ReserveTOFs

Jaiden, 4 - Townsville

Left isomerism, Leviocardia, DORV, AVSD

Ava, 5 - ChurchillPulmonary atresia, ASD

Benji, 4 - Rochedale SouthTGA


DiD you know? About 1 in 100 babies are born with congenital heart disease. That is six babies every day across Australia – more than 2000 per year. In the majority of cases, the causes of congenital heart disease are unknown?

Hayden, 4 - OrmeauDLV


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Ever since we found out on November 5, 2012, that our daughter Milla would have to have open-heart surgery I felt as though I was being pushed, kicking and screaming, towards something that I didn’t want to happen. Every part of me was shouting ‘This shouldn’t be happening’ but I was powerless to stop it. As a moderate control freak, I am happy to roll with what life throws at me. I have always felt somewhat in control of my life and, for once, I wasn’t at all. It is amazing how your mind works and, for me, the fear of the unknown was a powerful emotion that I wasn’t in control of. Milla, on the other hand, was excited to be getting her broken heart fixed. We have been very open and honest about what was going to happen to her and we have tried to prepare her as much as possible for the process – after all, knowledge is power. Her only request for while she was in hospital was that she got to have a ride in a wheelchair!

Sunday, december 9

Today, the day before Milla’s open-heart surgery, we have been invited to a friend’s barbecue. We wanted to keep everything normal for Milla. We had a great time and it helped ease the panic that I felt.

monday, december 10

4.30am Early wake-up call today. We washed Milla’s hair and tried to keep her mind off food. I bought Milla a purple (her favourite colour) t-shirt from Lorna Jane earlier in the week that said “Little Miss Never Give Up”. This was to be her hospital outfit, along with a pair of denim shorts. The quote is highly appropriate for our little Milla, who is the most determined child I have met.

The moment of truth was much harder for me than I thought. After watching Milla undergo four other minor surgeries in her time, plus having my eldest daughter, Addison, at the Mater Children’s Hospital earlier in the year with a perforated appendix, I thought I

would be prepared – but I wasn’t. To have to let go and trust that somebody else was going to look after Milla was the hardest moment in my life and was really quite confronting. I felt numb.

7.30am As I walked back to my husband Jacob, I felt sick. While Milla’s open-heart surgery was “garden variety” (the words of our cardiologist), anything and everything was possible. We were told not to stay in or around the hospital, so we didn’t. We went and had breakfast, although I didn’t eat very much of it, and to take up some time we watched a movie. I subjected my husband to Twilight which was mind numbing and exactly what I needed. It allowed me to have some respite from the thoughts that were running through my head.

11am We made our way up to 8 East Ward and chatted to Andrea Hyde (one of the Family Support Coordinators for HeartKids) until we got the call. They had moved Milla out of theatre and up into the Paediatric Intensive Care Unit.

1pm Everyone had told me to be prepared for what we were about to see – that it would be a shock and challenging but, for me, it was the exact opposite. Yes, there were wires, tubes, a breathing apparatus and beeping machines. But for us there was also a beautiful warm and fixed body beneath it all. It was a long day and night sitting by her bed. Milla was pretty drugged up so wasn’t conscious much.

TueSday, december 11

10am We were moved to 8 East Ward into Close Observations. Less tubes, wires and machines today.

Milla was more composed, still groggy, but not in pain which was all that I cared about. I felt relaxed and

I t ’ s hard for an outs ider to imagine the pain a parent goes through as the i r young Hear tK id faces open-hear t surger y. Our e f fer vescent magaz ine covergi r l Mi l la

(who was jus t 11 days pos t -op at the t ime of the photo shoot) proves jus t how quick ly

they bounce back. Here i s Mi l la ’s s tor y, in her mother ’s own words

WORDS: RACHAEL STECHER

In A MOtHer’s wOrds




DID YOU KNOW: Hear t d i sease i s one of the mos t common bi r th abnor mal i t ies . About hal f o f a l l the chi ldren d iagnosed wi th hear t d i sease requi re surger y to cor rect the defect

started to feel a little like my old self although I have never felt so tired or drained in all my life. It is amazing how within such a short amount of time you can go from feeling complete terror to complete contentment. I was asked to leave Close Obs at about 9pm. One of the lovely nurses made a bed for me. I have never been so grateful. Even though it was a pull-out sofa bed in the parents’ lounge, I slept well.

Wednesday, december 12

6am I woke to one of the nurses saying Milla wanted me. She was sitting up in her bed and had some of her usual colour back in her cheeks. The nurses wanted Milla to get up today. I thought they were crazy, but they insisted. Milla, in typical style, negotiated with one of the nurses that she would get up only if she was allowed to ride in a wheelchair. She got her way.

Jacob came and went throughout the day, helping bring food to me and clean clothes while ensuring Addison felt loved and looked after on the ‘outside’. We had discussed how we would ensure Addison felt involved in the process and when was the right time to bring her up to the hospital. We felt today was the day. She handled it with a maturity and understanding far beyond her years. I am very grateful to have such a brilliant daughter.

More tubes came out today. Later this afternoon,

Milla was asked to get out of bed and this time she had to walk. She certainly wasn’t sure about this but the physio insisted. To our surprise, once she got her balance, she was off. We played in the kids’ play room, walked around the ward and when I said she needed to get back into bed (I was having my own heart failure because she was so active!), she didn’t want to. Our little girl was back.

Thursday, december 13

I was greeted by smiles and happiness today. The occupational therapist and physio showed us how to handle Milla and what she could and couldn’t do for the next eight weeks. It was another day of wire removal – the last of the bits and pieces sticking out of her. Any adult would find it hard to deal with all the poking and prodding Milla had gone through and yet she still allowed the nurses and doctors to do what they needed to do, even though she knew it would hurt. We were moved to the regular ward where I could sleep right next to her.

Friday, december 14

Milla and I were determined we would go home today. Milla had recovered really well – better than anyone expected. The surgeons and cardiologist did their rounds and couldn’t see any reason for us to stay. So, four days after open-heart surgery, we went home! We were greeted at home by a beautiful ‘Welcome Home’ sign designed by Addison. This was the first day of the rest of our lives.


?


WEB: The Hear tK ids Hero webs i te can be found at www.hear tk idshero.org.au. To be par t o f a Hear tK ids Qld team at any of th i s year ’s major fun r un fundraiser s , v i s i t www.hear tk idsqld.org.au

There is an inner ‘hero’ that lies in all of us, that thrives on challenge and is motivated by achieving set goals. It is this passion that HeartKids Qld hopes to encourage through supporting individual fundraising efforts under the new ‘HeartKids Hero’ banner.

Developed in 2012, HeartKids Hero is the name given to all fundraisers for HeartKids Qld and is also a website where these fundraisers can find ideas, share images and inspire one another. Each HeartKid Hero receives a profile on the site so it’s the perfect place for Heroes to send their supporters who are interested in making an easy online donation. HeartKids Qld uses the site to distribute tips and advice on how to achieve fundraising goals and HeartKids Heroes can also download posters and invitation templates directly from there.

Among the fundraising superstars of 2012 was Michelle Langdon whose efforts around the Noosa Triathlon last year helped HeartKids Qld raise more than $75,000 from the one event alone. In 2013, big-ticket fundraising opportunities will surround the City2South, Bridge to Brisbane and Gold Coast Bulletin Fun Run. There will also be a HeartKids Qld team competing the Noosa Triathlon again this year.

But don’t think you have to arrange a large-scale event to be a HeartKids Hero. Did you know just $50 can buy emergency in-hospital meals for a parent for a week while their child is in hospital and $100 can provide a night’s accommodation for a regional family in Brisbane while their child is in hospital? You could simply host a morning tea or a movie night at your house or even start an office fundraising challenge with prizes for

the person who raises most. The HeartKids Hero website provides tips for planning your fundraiser around themes like cooking, parties and sport, for example.

One inspiring HeartKids Hero is Georgie Nowell, 14 (above). She is the big sister of HeartKid Ella, 8.

“I have watched Ella go through three open-heart operations and being on life support not knowing if she’s going to make it,” Georgie says. “I know how hard it is for families, and the HeartKid, through these times.”

Georgie decided she wanted to make a tangible difference and set about turning her passion for go-karting into a fundraiser for HeartKids Qld. She sent around some emails and before she knew it she had a sponsor (Bill McDonald and the MCG Group) and a new go-kart branded with the HeartKids logo.

“I’m so excited to get racing for HeartKids. Now I finally have my own way to raise awareness. I urge other people to help HeartKids Qld like I have through their own interests and hobbies. It couldn’t be easier.”

There are so many ways to help Hear tK ids Qld cont inue our sought -af ter wor k , but fundrais ing

i s one of the mos t impor tant . You’ l l be sur pr i sed by jus t how fun i t can be!

puTTing THe ‘fun’ in fundraising

How are you affiliated with HKQ? I go out raising awareness and funds for them, tirelessly pounding the pavement, rattling my tin for donations. I’ve raised more than $40,000 in two years.What do you like so much about HKQ? I like the way everyone is like a great big family – always there for eachother and always willing to help.How do you feel when you see images of tiny HeartKids with a ‘zipper’ scar? It hurts me to see these poor lil’ ones who haven’t had a chance to have a normal life before having to suffer such trauma. What’s been your most memorable HKQ event of 2012? When I went to the hospital and got to meet some of the kids I am helping with my fundraising. It was quite a humbling moment.If you personally know a HeartKid, what would be your one wish for them? I really just wish them a long and fulfilling life and not to have to keep going through the endless doctors’ appointments and operations. They are such little heroes.Do you have any words of hope for newly diagnosed HeartKids? Be strong. You have the biggest network of people (HKQ) who will help you to the best of their ability. Have faith.

‘Top Hat’ Tony Maroney HeartKids Hero, D’Aguilar

There are so many amazing people associa ted wi th Hear tK ids Qld (HKQ) for a var ie ty of reasons , each br inging a unique per spect ive to the organisat ion that

suppor ts ch i ldren wi th broken hear ts . For a l l the i r d i f fe rences , these people a l l share a common goal – to suppor t and share thei r love for these l i t t le f ighter s

MAKING A DIFFERENCE


web: To fo l low Top Hat Tony’s fundrais ing ef for t , or to suppor t Tony’s wor k for Hear tK ids Qld wi th your own donat ion, v i s i t www.ever ydayhero.com.au/tophat tony

PHO

TO: C

AR

LY H

EAD

How are you affiliated with HKQ? My second child was diagnosed with CHD at my 18-week scan in 2009. Since then, I have undertaken fundraising activities for this wonderful organisation.What do you like so much about HKQ? The immense support offered by the Family Support coordinators at the Mater Children’s Hospital. They are a calming presence when you feel like your world is falling apart.What’s been your most memorable HKQ event of 2012? The Christmas party at Aussie World. It provided an opportunity to meet other families and foster new friendships.If you personally know a HeartKid, what would be your one wish for them? That all HeartKids have the chance to experience the joys and adventures of just being a kid. Do you have any words of hope for newly diagnosed HeartKids? Whether it is through the HKQ website, Facebook page or the Family Support coordinators, you have access to a wide range of knowledge and experiences. You’re never a stranger with HKQ.

MAKING A DIFFERENCE

How are you affiliated with HKQ? HeartKids came to my attention through one of my fellow members of Ipswich City Rotary Club who had a child born with heart disease. I had no hesitation in accepting the role of patron.What do you like so much about HKQ? The support networks offered to families by the organisation, members and corporate sponsors.What’s been your most memorable HKQ event of 2012? The visit to RAAF Base Amberley. Getting up close to those giants of the sky was very special. All who attended enjoyed a memorable day on the base. If you personally know a HeartKid, what would be your one wish for them? That all kids continue to enjoy good health following their series of successful operations, and when they are old enough to understand, that they too become ambassadors for HeartKids.Do you have any words of hope for newly diagnosed HeartKids?Parents need to know they are not alone and support is always available. Medical advances are saving lives every day.

Jaden Dixon HeartKid, aged 17, Cairns

Paul PisasaleHeartKids Qld patron, Brassall

Urshala Clark HeartKid mum, Carina


DiD you know? Hear tKids Qld began in 1984 and was or iginal ly a small group of parents meeting informally for suppor t . At the t ime, the group was cal led ‘Hear t to Hear t ’ Cardiac Suppor t Group Inc ?

How are you affiliated with HKQ? I’m a HeartKid myself. I was born with HLHS.What do you like so much about HKQ? I like that it is like a big extended family. I also love that HKQ is always there. I know that if I were to need anything, they wouldn’t turn me away which is amazing.What’s been your most memorable HKQ event of 2012? I have had the privilege to meet a few of the behind-the-scenes people from HKQ which has been truly amazing. Also meeting new parents here in Cairns for a morning tea was a lovely experience. If you personally know a HeartKid, what would be your one wish for them? I have one wish for each HeartKid and it’s just for their lives to be all that they want them to be.Do you have any words of hope for newly diagnosed HeartKids? I won’t lie and say it’s easy, because it’s not. It is a difficult journey. The people you meet and the love that surrounds you truly makes you feel like everything happens for a reason.

Scan QR code for our pricelist

HEARTKIDS MERCHANDISE

HOW YOU CAN HELP US

HeartKids Qld thrives on the support of the community. If you’d like to help us continue our important and life-changing work, here’s how...

To find out more, call us on 07 3847 7552 or visit www.heartkidsqld.org.au

We have a great range of merchandise that you can purchase to help those affected by Childhood Heart Disease. DONATE Donate in memory, in lieu of a present

on a special occasion, leave a gift in your will or arrange workplace/payroll giving

FUNDRAISE HeartKids Heroes always have fun raising money and we’d love you to join in

PARTNER WITH US Likeminded workplaces are always welcome. And remember our corporate charity Christmas cards this year

MERCHANDISE Scan the QR code (left) for our merchandise order form


By combining the perfect blend of clean burning wax and intense fragrances, Salt City Candle Company has furthered the age-old

tradition of candle making into a modern art form. Manufactured from the highest quality materials, Salt City Candles burn safe, long, and clean, and produce amazing aromas that will permeate your home for hours.

www.saltcitycandle.com.au 07 3286 7667

intense fragrance


DiD you know? Hear tK ids , w i th the suppor t o f i t s sponsor s and donor s , i s proud to have commit ted more than $1,500,000 in funding for research projects looking to unlock the mys ter ies o f CHD

Whi le there are many, many wonder fu l s tor ies o f sur v ival , the fact i s that ch i ldhood hear t d i sease does take some

specia l ch i ldren away f rom th i s wor ld . Now, there’s a real s tar in the n ight sky to help us commemorate these Hear t

Angels ’ shor t - l i ved l ives

Did you know childhood heart disease is one of the leading causes of infant death in Australia (that is, death in children under the age of 12 months)? Did you also know that around 250 Australians die of congenital heart disease each year? That is more than four people every week.

HeartKids Qld CEO Anne Bannister says that while these facts are often quoted in HeartKids literature, the sad reality of these facts is that there will be many bereaved families within the HeartKids Qld community.

“Just like other HeartKids’ families, these families need the support, encouragement and hope to continue long after their precious HeartKid becomes a Heart Angel,” Anne says.

“Parents need to be able to say their child’s name and know they won’t ever be forgotten. Siblings need to be reassured that they are still welcome at HeartKids events. Anniversaries and difficult ‘special days’ in the calendar year need to be acknowledged.”

To commemorate and honour all the Heart Angels, last year HeartKids Qld registered a real star in their name with the International Star Registry. It was registered on February 14 – international Childhood Heart Disease Awareness Day. The star was named ‘HeartKids Heart Angels Flying High’ and it can be found within the constellation Orion.

“Grieving a child is not something you ‘get over’. You never get over the death of a child but you do need to adapt your life around the loss,” Anne says.

“HeartKids Qld is here to support and give hope to bereaved families, so that they may be able to keep on living meaningful, though drastically changed, lives.”

stArligHt stAr brigHtA Father’s Grief

It must be very difficult

To be a man in grief,

Since “men don’t cry”

and “men are strong”.

No tears can bring relief.


To stand up to the test,

And field the calls and visitors

So she can get some rest.

They always ask if she’s all right

And what she’s going through.

But seldom take his hand and ask,

“My friend, but how are you?”.

He hears her crying in the night

And thinks his heart will break.

He dries her tears and comforts her,

But “stays strong” for her sake.


To start each day anew.

And try to be so very brave –

He lost his baby too.

– Author unknown

The details of the ‘HeartKids Heart Angels Flying High’ star are filed in the International Star Registry’s vault in Switzerland. To learn more about our special star, scan the QR code, above.

reACH for tHe stArs

Whether you are the pat ient or the parent , a s tay in hospi ta l can be qui te tedious i f you don’ t have some in teres t ing act iv i t ies on hand to pass the t ime. The key i s to

p lan ahead. Download plenty of eBooks and a pps and pack some fun, hands-on ar t and craf t act iv i t ies . Here are a few ideas . . .

THings To Do in HospiTal

LOLs: BEsT JOKEs FOR KIDsBy Mick LoobyWhat must you be careful not to do when it’s raining cats and dogs? Step in a poodle! LOLs is a laugh-out-loud collection of jokes, riddles, rhymes and sayings from kids around Australia. Published by Allen & Unwin. eBook $9.99

ebooks.maryryan.com.au/collection/children

BIG QUEsTIONs FROM LITTLE pEOpLE Edited by Gemma Elwin Harris Children have a knack of asking great questions.

Imagine if you could turn to an expert and ask

them for the answers? This book does just that.

More than 120 real questions from children aged

5-12 years, answered by experts such as Sir David

Attenborough and Richard Dawkins. Published by Faber. eBook $11.95 www.angusrobertson.com.au/ebooks

THE MOTHERs’ GROUp

By Fiona HigginsThis book tells the story of six very different women

who agree to regularly meet soon after the births of their babies. Set during the first crucial year of their babies’ lives, it tracks the women’s individual journeys – and the group’s collective one – as they navigate birth, motherhood and the shifting ground of their relationships with their partners. Published by Allen & Unwin. eBook $15.95 www.angusrobertson.com.au/ebooks

HARDMEN By Malcolm AndrewsThe ranks of rugby league around the world have been liberally peppered with ‘hardmen’. This book captures the unique spirit of rugby league with the greatest collection of ripping yarns ever published in a single volume. Published by Allen & Unwin. eBook $26.99

www.angusrobertson.com.au/ebooks

BLINKY BILL By Dorothy WallBlinky Bill is one of the best-loved Australian children’s book characters of all time. Published by Harper Collins. eBook $7.99 www.angusrobertson.com.au/ebooks


web: Check out the fun pr in table colour ing- in sheets and masks avai lable on the Hear tK ids Hero webs i te a t www.hear tk idshero.org.au. Cl ick on the ‘Resources ’ tab and scro l l down to ‘Downloads’

BooKs foR KiDs anD paRenTs

HanDy apps

lotta magazine www.lottamagazine.com

Australia’s first ad-free kids’ magazine, Lotta is released four times a year and is packed to the brim with hands-on art, crafts, games and activities for kids aged 5-10 years. At $10 per copy, this is one magazine worth its weight in gold! Check out the website for even more boredom-busting activities on the Lotta blog.

seedling

www.goodthingsforkids.com

Seedling products are not only inspiring and educational, they look great too. With dozens of activity kits tailored to boys and girls as well as other stationery and fun play stuff, there will be something here for every child’s interest and every parent’s budget.

south Bank Pocket guide www.visitsouthbank.com.au/download-our-new-app

South Bank Pocket Guide App is packed with the best info on what to do, where to go and other exclusive offers at cosmopolitan South Bank

(which is walking distance from the Mater Children’s Hospital). Search under Food + Drink, Shop + Indulge, Arts + Culture and more.

WeB child www.webchild.com.au/web-child-app-demo

If you’re looking for ways to entertain the kids, or planning a stay in Brisbane, try Web Child’s Calendar App. It includes a calendar and city guide, activities in 12 categories, venues and directions, or you can get

random inspiration via the ‘shake’ function.

toYota PlaYgRound www.thestickerfamily.com.au/view/myapps

This app lets creative kids play their fave games with the My Family sticker characters, made famous on the windows of cars all over the

country. With five interactive activities, kids can create, problem-solve and have fun with characters based on members of their own family.


DiD you know? HKQ Fami ly Suppor t team member s are on hand at the Mater Chi ldren’s Hospi ta l to help keep those long days in teres t ing wi th fun games and act iv i t ies and other organised events?

ADFRE

E

ART • CRAFT • HANDMADE TOYS •

ACTIVITIES • DRAWING • GAMES • PLAY • COLOURING

SCHOOL

HOLIDAY FUN

The travel issue

Lotta

ADFREE

SCHOOL HOLIDAY FUN The colour issue

Lotta

ART • CRAFTS • GAMES • ACTIVITIES

art aND CraFt

HaNDy appS

Jus t a hop, sk ip and a jump f rom the Mater Chi ldren’s Hospi ta l you wi l l f ind ARIA and R iverbar & K i tchen, two amazing eater ies r un by celebr i ty chef Mat t Moran. We encourage you to cross

the r iver and v i s i t or, why not t r y to recreate a l i t t le b i t o f Moran magic a t home wi th the k ids?

WORDS: Matt MORan

EAt youR HEARt out

Method

Place the cinnamon, coriander, cumin, ginger and salt in a frypan and heat gently until the seeds start to pop and release their flavour. Transfer the spices into a mortar and pestle and grind to a fine powder.

Heat a little olive oil in a small saucepan over low heat and sauté the onion and garlic for about 10 mins until slightly translucent. Stir in the spice powder, mix, cook for a further 5 mins. Remove from heat. Cool.

Place the lamb mince in a bowl with the spiced onion and garlic mixture, parsley, pine nuts and breadcrumbs and mix together until all ingredients are combined. Divide the mixture into six portions and mould each portion around the skewers. Place the lamb skewers over a hot grill or barbecue for 10 mins, turning every couple of minutes to ensure they are cooked evenly. Serve with lemon cheeks and tahini.

LAMb KoftA

This is a great dish to serve for lunch in Summer with a Greek

salad and fresh pita bread

Serves 6

Ingredients

1 cinnamon quill

2 teaspoons coriander seeds

2 teaspoons cumin seeds

1 teaspoon ground ginger

2 teaspoons salt

1 brown onion, peeled and finely diced

3 cloves garlic, peeled and finely sliced

50ml olive oil

600g lean lamb mince

¼ bunch parsley, finely sliced

50g pine nuts, toasted

50g Japanese breadcrumbs

6 skewers, presoaked

1 lemon cheek

6 tablespoons tahini


web: you can find Mat t Moran on facebook at www. facebook.com/chefmat tmoran or v i s i t h i s webs i tes a t www.ar iares taurant .com and www.r iverbarandki tchen.com.au

3 eggs2 cups buttermilk60g butter, melted300g plain flour1 teaspoon bicarbonate of soda200g strawberries

120g raspberries120g blueberries300g ricotta120ml raspberry puree60ml maple syrupicing sugar

Buttermilk pancakes with fresh Berries

Serves 6

Ingredients

Method

Carefully separate the eggs and beat the egg yolks well. Whisk in the buttermilk and melted butter. Sift the flour and bicarbonate of soda into the egg mixture and fold together. Just prior to cooking the pancakes, whisk the egg whites to a soft peak and then carefully fold into the batter.

Heat a lightly greased, heavy based frypan and ladle in enough batter to form a pancake of your desired size. Cook until bubbles form on the top side and then flip over and cook the other side until golden brown.

Cut the strawberries into quarters and mix in the blueberries and raspberries. To serve, layer the pancakes with the berries and ricotta, place more berries on top and drizzle the raspberry puree and maple syrup around the stack. Finally, dust with icing sugar and serve.


DID YOU KNOW? aria is at eagle street pier, Br isbane (07 3233 2555). riverbar & ki tchen is at ripar ian plaza, 71 eagle st , Br isbane (07 3211 9020). check the respective websi tes for opening hours?

CafesDesmond and Molly Jones 615 Stanley St, Woolloongabba07 3162 5797Open weekdays 7am-4pm

Clarence Corner Bookshop596 Stanley St, Woolloongabba07 3844 5591www.cornerbookshop.com.auOpen weekdays 5.30am-2.30pm

The Little Prince espresso8 Annerley Rd, Woolloongabba07 3391 4658www.littleprinceespresso.comOpen weekdays 5.30am-2pm, weekends 7am-noon

Jacob’s Well CaféMater Children’s Hospital, Level G07 3163 8662Open weekdays 7am-5pm

ResTauRanTsVespa Pizza617 Stanley St, Woolloongabba07 3391 4300www.vespapizza.com.auOpen Tues-Sun from 5pm, also Friday lunch noon-3pm

Hana sushi 551 Stanley St, South Brisbane07 3010 5799Open weekdays 10.30am-8pm, weekends 11am-8pm

The Plough Inn Little Stanley St, South Bank07 3844 7777www.ploughinn.com.auMon-Thurs 11am-10.30pm, Fri-Sat 10am-midnight, Sun 10am-11pm

Ben’s Chinese and Vietnamese Restaurant 14 Annerley Rd, Woolloongabba07 3391 3233www.bensrest.com.auOpen seven days, lunch 11am-3pm, dinner 5-10.30pm

need to grab a quick, decent b i te or a hot cuppa whi le based at the mater chi ldren’s hospi ta l? here are our p icks of the bes t shor t -walk or shor t -dr ive cafes and res taurants

What does your version of paradise look, feel and smell like? If it looks like a white sandy shell-covered beach, feels uber-relaxing and smells like salt air, then North Stradbroke Island is paradise.

Whether you’re a Brisbanite, or visiting Brisbane from elsewhere around the state, the island affectionately known as ‘Straddie’ is quite simply, easy.

Getting there is an easy (and fun for kids) 45-minute ferry trip in your car from bayside Cleveland, or an even shorter water taxi ride if you plan to utilise public transport at the other side.

You can spend your time doing nothing at all, or everything from guided tours, four-wheel driving, scenic walks, scuba diving, snorkeling, surfing, swimming and fishing, to beach yoga, café-hopping, boutique shopping and whale watching.

Accommodation choices on the island are wide and

suit all tastes, budgets and levels of adventure seeker. Camping is popular and can be enjoyed in easy-access campgrounds boasting all the required amenities or, for those visiting in four-wheel drives and looking for adventure, you can also camp in a secluded section of wilderness among the trees along Flinders Beach.

For easy, self-contained accommodation options, your first decision is which of Straddie’s three main townships

North Stradbroke ISlaNd, juSt a Short ferry trIp from brISbaNe’S baySIde, offerS a perfect famIly Getaway to help recharGe the batterIeS WORDS: Bel inDa gl inDemann


recharGe aNd recoNNect

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you want to set up house in. Point Lookout is a popular choice for tourists, but the hidden gem is Amity Point.

Amity Point remains uncommercialised and has that true sleepy fishing village vibe that oozes relaxation for busy families. True, there is only one corner store and one café/restaurant but that’s all you need – a place to buy magazines and iceblocks and chinwag with the locals, and a place to grab real coffee. Sorted. You can also purchase the freshest seafood, including prawns direct from the trawler, oysters, crabs, bugs, fish and loads of other goodies, at Rufus King Seafoods just down the main drag.

A stay at Amity Point is not complete without a sunset walk along the jetty (dolphins are regular visitors here) or a spot of fishing. Bream and squid can easily be caught from the jetty or anywhere along the rockwall – there are many public access points to fish from the wall if you aren’t staying in your own waterfront holiday house.

Koala spotting and lazy afternoons on Amity Beach are also popular holiday activities for families. In fact, you will probably spend a lot of your time on Amity Beach.

With brilliant white sand and shady trees, the beach is closed to all four-wheel drive traffic so you don’t have to worry about the cars around your kids. It’s dog friendly, offers small waves perfect for the littlies and it is also a shell hunter’s paradise.

And when wet togs and rubber thongs are standard-issue uniform for getting about Amity Point, paradise is well and truly found.


What a year 2012 was for Hear tK ids Qld (HKQ)! F rom the footy to the a i r force, we did i t a l l . Here’s some of what we got up to. . .

WORDS: HeaRtKiDS QlD CeO anne BanniSteR

THe year THaT Was


web: Check out the ‘H i s tor y ’ page under the ‘about Us ’ tab on our webs i te to see the other mi les tones th rough the year s that have helped sha ped the organisat ion we are today

February 2012

HKQ reps joined the Mater Children’s Hospital and Qld Paediatric Cardiac Services team in celebrating the lives of Heart Angels at the annual bereavement service. Families in attendance received a HeartKids Star, to forever remember their angel. Other Awareness Month activities included our HeartKids Rock & Roll Ball, which was a great success and saw many people grooving to the fabulous sounds of the ’50s and ’60s.

March 2012

HKQ made a presentation at the Ashgrove Rotary meeting. If you would like someone from HeartKids to speak at your local community group, please contact us.

april 2012

Players from the Brisbane Broncos

joined football legend Wally Lewis (above right) and the Easter Bunny to visit our HeartKids on the 8 East

Ward at the Mater Children’s

Hospital. Kevin Rudd MP (himself an

adult HeartKid) was appointed a HeartKids

ambassador and launched a TV commercial in

support of our organisation.

May 2012

We launched our first ever Queensland TV commercial in partnership with the Brisbane Broncos. Our ‘Mending Hearts’ campaign drew attention to the plight of children born with congenital heart disease and included a feature story on Channel 9’s The Footy Show, articles in various newspapers and culminated in a game day appearance by a team of HeartKids who had the once-in-a-lifetime experience of playing a game of football on the hallowed turf of Suncorp Stadium during half time of the Broncos vs Manly Sea Eagles round.

In other news this month, HeartKids outdoor posters started appearing across Brisbane thanks to corporate supporter JC Decaux, new TV, video and gaming equipment was installed on the 8 East Ward, the mural commenced in 8 East playroom and our first ever First Aid Awareness workshop was held in Townsville, in conjunction with HeartKids attendance at the Townsville outpatient clinic.

June 2012

HKQ visited Cairns outpatient clinic and held a First Aid Awareness workshop and morning tea for parents.

July 2012

Eight wall-mounted activity centres were installed in the consulting rooms and a single free-standing activity

centre was installed in the waiting area of the Queensland Paediatric Cardiology outpatient clinic at the Mater Children’s Hospital.

august 2012

Our community fundraising platform HeartKids Hero was launched this month, enabling members of the community to fundraise for HKQ with ease. We also enjoyed a visit by country music sensation and HKQ ambassadors O’Shea to the 8 East ward (see Mark O’Shea’s story on Page 8). HKQ held a First Aid Awareness workshop and outpatient clinic visit to Rockhampton and an outpatient clinic visit to Mackay.

septeMber 2012

Our first ever Family Camp was held at Mount Tamborine on Father’s Day weekend and saw families enjoy the great outdoors with a range of activities including archery and high ropes, plus night time trivia. The 2013 Family Camp will be held


DiD you know? 2012 saw the a ppointment o f an addi t ional Fami ly Suppor t coordinator to expand our in -hospi ta l suppor t to f ive days per week (up f rom three days per week)?

in September 2013 – numbers are limited, so make sure you subscribe to our email newsletters to be first to register when applications are called for.

OctOber 2012

The annual HeartKids Education Day was held in Brisbane this month. This is a one-day seminar for families affected by CHD and featured presentations from some of Australia’s pre-eminent researchers

and clinicians regarding CHD research, treatment outcomes and models of care. Whilst numbers were low due to the inclement weather, the HeartKids Queensland AGM and barefoot bowls event was also held this month at Greenslopes Bowls Club. Hopefully more members will be able to make it along to the 2013 AGM, to be held in December 2013 (date and venue TBA).

HKQ held a Gold Coast First Aid Awareness workshop and also visited the Townsville outpatient clinic.

NOvember 2012

Some 55 triathletes and their support crews competed in the HeartKids Noosa Tri team in the 30th Anniversary of the Noosa Triathlon festival (right). An amazing $75,000 was raised by these HeartKids Heroes! Our lucky HeartKids and their families also got up close and personal with Air Force aircraft and equipment at the annual Fun Flight event, hosted by the RAAF Base Amberley’s Number 36 Squadron (left).

December 2012

On December 2, just over 170 HeartKids and their families (totalling close to 300 people) attended our annual Christmas party at Aussie World on the Sunshine Coast. A great time was had by all. They enjoyed the park as well as Miss Donna the clown, face painting and lunch. It was a great opportunity for many families to meet each other and share the common bond of having to deal with children with heart conditions, giving reinforcement they are not alone. All the kids had such a fun time, as did the adults.

We also had a HeartKids Christmas party in Townsville on the same day with just over 60 HeartKids and their families attending. We would like to thank all the local businesses who contributed to making it such a fun day for our kids and their families, and especially to our volunteer Petrece who did an amazing job of coordinating the day for us.

JaNuary 2013

Twelve teens and 10 volunteers from Queensland attended the annual HeartKids Teen Camp in regional Victoria (below). Some 79 teens from across every state and territory of Australia enjoyed an activity-filled four days including a giant swing, flying fox, low ropes, reptile education, yabbying, an ‘op shop’ ball, bush cooking, trivia night and marshmallows by the campfire.

heartkids QLd directory


Hospitals For emergencies call 000

mater children’s Hospital phone 07 3163 8111 (switchboard) Raymond Terrace, South Brisbane, Qld 4101Visiting hours are from 7am-7pm

mater children’s Hospital 8 east (cardiac ward) phone 07 3163 7573 or 07 3163 7576

Queensland paediatric cardiac services (outpatient clinic) phone 07 3163 1667. Level 4, Mater Adult Hospital. cardiac care coordinators, phone 07 3163 7108

the prince charles Hospital phone 07 3139 4000. Visit www.health.qld.gov.au/tpch

travelpatient travel & accommodation assistance – mater Health services phone 07 3163 2325 Fax 07 3163 2326 email [email protected]

Ask for a copy of the latest “accommodation and Facilities guide” when you contact Patient Travel. This brochure will give you a list of accommodation providers within walking distance of the Mater Children’s Hospital.

Queensland residents Government financial assistance for Qld residents who have to travel long distances is called ”PTSS”. Visit www.health.qld.gov.au/ptss

new south Wales residents Government financial assistance for NSW residents who have to travel long distances is called ”IPTAAS”. Visit www.health.nsw.gov.au/transport/Pages/default.aspx

community servicesaustralian Breastfeeding association phone 1800 686 268 (helpline) or visit www.breastfeeding.asn.au

Department of Families, Housing, community services and indigenous affairs (FaHcsia) phone 1300 653 227 or visit www.fahcsia.gov.au

centrelink Visit www.centrelink.gov.au

counselling service phone 1300 30 1300 or visit www.parentline.com.au

Kidsafe Queensland phone 07 3854 1829 or visit www.kidsafeqld.com.au

lifeline phone 13 11 14 (24-hour crisis line) or visit www.lifeline.org.au

mensline australia phone 1300 78 99 78 (24-hour line) or visit www.mensline.org.au

playgroup Queensland phone 1800 171 882 or visit www.playgroupqld.com.au

poisons information line phone 13 11 26

pregnancy, Birth & Baby Helpline 24-hour national line, providing confidential information, support and counselling. phone 1800 882 436

sanDs (QlD) inc. Stillbirth and Neonatal Death Support Group (including Miscarriage Support). phone 1300 072 637 or visit www.sandsqld.com

siDs and Kids 24-hour bereavement support, infant safe sleeping info, Mon-Fri 9am-5pm. phone 1300 308 307 or visit www.sidsandkids.org

the compassionate Friend Bereavement service. phone 07 3254 2585 or visit www.compassionatefriendsqld.org.au

Women’s infolink Resources, information and links to services available to women and girls. phone 1800 177 577 or visit www.women.qld.gov.au

aDolescent servicesKids’ Helpline phone 1800 55 1800 or visit www.kidshelp.com.au

nationaL Partners

QUeensLand Partners

a big thank yoU to oUr Partners

www.jameshomeservices.com.au

Proudly supporting HeartKids Queensland

HeartBeat - 2013Qld Annual Magazine

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Transcript of HeartBeat - 2013Qld Annual Magazine