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VICTORIA Autumn 2012

Quarterly Newsletter for Victoria and Tasmania

Volume 22 Issue 1

* New RCH Useful Information * Heart Children Achieving * Milestones H  eartKids Teen Camp



support

awareness

research

advocacy


Matters of the Heart Chief Executive Officer

Our Team HeartKids Victoria Board 2011-2012 * Chairperson: Gary Karatjas

On behalf of all of us at HeartKids Victoria I would like to thank everyone who contributed stories, volunteered time or made donations throughout February to help make our Awareness Month such a success. We had a terrific response to our Awareness Month activities. Special thanks to our national sponsor Retail Food Group for their support during the month selling HeartKids combos and the Wall of Love for people to write messages to our heart children. We received a number of responses to our request in the last newsletter to update member records – thank you to all who have responded, this will help us to continually improve the way we provide support services. In this edition we have a number of articles on special events that occurred since the last newsletter as well as upcoming milestones and events. For instance, we have a special article on the recent 2012 Teen Camp. It was a wonderful event and continues to be a highlight of the year for many of our older heart children. It is a great opportunity for teens to meet and mix with others from around the country with similar conditions. I would encourage as many of you that are able to take part in 2013. As always, we have had a number of members and friends do fantastic work in fundraising on our behalf. In Tasmania, Aussie Coupes.net, Kylie Smith, Claire Gluyas, Amber Loone and Li Enniss deserve special mentions as do Stuart Braine, the Black Horse Foundation and our Bendigo Branch and Strategem Community Foundation here in Victoria. There are many major events coming up that are exciting for HeartKids. Julie Hoffman will attempt to break the world record for performing Burpees to raise funds for HeartKids. This strenuous exercise challenges the fittest of athletes and I was there last year when Julie completed one-thousand burpees. It is amazing that this year she is going to do an extra five-hundred to set a new world record. Another exciting initiative that you will see within the next month is the HeartKids Cup. During round 4 of the AFL season, on Sunday 22 April, the Sydney Swans and North Melbourne football clubs will play for the HeartKids Cup with the match being televised on Channel 7. It will be a great opportunity for us to raise awareness for childhood heart disease and HeartKids. We also have two major evening events. The HeartKids Night of Nights on 25th May, run for us by the Rotary Club of Tullamarine, and the HeartKids ‘Capture a Heart’ Gala Ball on the 15th June, run by our own Events Committee. All are welcome and further details can be found in this edition of the newsletter. Finally, the Board invited David Cohen and myself to fill two unfilled Board vacancies until the 2012 election. You can see David and I listed as General Board Members in the adjacent column. It is with great pride that I accepted this position and will continue to work to represent you, the members, as best I can. Please enjoy the newsletter. Terry Hopkins CEO HeartKids Victoria

ts children with heart HeartKids Victoria proudly suppor Tasmania. disease and their families throughout r to the back page For Tasmanian enquiries - please refe ators’ contact details. for our Tasmanian Branch Coordin

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* Vice Chairperson: Natalie Palmer * Treasurer: Deborah Bowling * Secretary: Lauren Trengove

* General Board Members: Karin Burgess Phil Riggio Chris Palmer David Cohen Toni Planinsek Terry Hopkins

HeartKids Victoria Employees * Chief Executive Officer Terry Hopkins 0478 085 480 terry.hopkins@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinators Sherrie McDonald sherrie.mcdonald@heartkids.org.au Amy Heafield amy.heafield@heartkids.org.au

* Support Events Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au

* Administration Assistant Amy Emmett amy.emmett@heartkids.org.au * Membership/Newsletter Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Newsletter heartkids@heartkids.org.au

Front cover: Heart child James Harbour - turn to page 14 to read James’ Story as told to us by his mum, Brooke Harbour Thanks to all who sent photos and information for this Contributions are always edition. welcome - send to: heartkids@heartkids.org .au

Thanks to Fuji Xerox and Documents On Call for printing our newsletters. Thanks to Gordon Patullo for post processing of some digital images.

this newsletter is of the personal stories in Permission to reprint any er articles may be oth Any . rson irpe or the Cha required from the author oria. Vict ds rtKi Hea to ledgement reprinted with an acknow do not imply ter published in this newslet . Please note that articles s of HeartKids Victoria view rall ove ect refl not endorsement and may d stories represent nions expressed in chil each Also note that the opi l details are specific to dica me t tha and s nce d’s, chil r you personal experie to ilar sim ditions may appear case. Although the con more specific information ng uiri req s ent Par er. other details may diff ir child’s cardiologist. should check with the


Coming Events

Good Friday Appeal - Friday 6th April

The Good Friday Appeal is a unique fundraising activity that brings together people from all parts of the community with the goal of raising money for The Royal Children’s Hospital. Please visit the Good Friday Appeal website to see the events and activities planned for the day www.goodfridayappeal.com.au or visit Etihad Stadium on Good Friday - it’s the hub of the appeal with lots of family-friendly activities.

Hoffy’s Challenge - Saturday 14th April

Ferntree Gully Hotel (1130 Burwood H’wy, Ferntree Gully) In memory of her niece, Stacey, who would have turned 18 this year, Julie Hoffman is aiming to raise a minimum of $18,000 for Heartkids. Her challenge is to do 1500 Burpees, the most challenging full body exercise. To read more and show your support, visit: http://www.everydayhero.com.au/hoffys_burpee_challenge All heart children are invited to participate in a Burpee Relay at Hoffy’s Burpee Challenge. Please wear a red t-shirt and arrive at the Ferntree Gully Hotel before 11am.

In This Issue 2 Matters of the Heart 3 Coming Events 4-5 HeartKids Australia Teen Camp 2012 6-7 Heart Children Achieving Milestones 8 MonashHeart News 9 Royal Children’s Hospital News 10-11 New RCH Useful Information 12 New Babies; Branch News 13 News from Tasmania 14-15 James’ Story 16 HeartKids Australia News 2 17 Reflections 18 HeartKids Awareness Month 19-22 Donations and Fundraising 24 Diary Dates

HeartKids Cup - Sunday 22nd April North Melbourne vs Sydney Swans

In this Round 4 game the Sydney Swans and North Melbourne football clubs will play for the HeartKids Cup with the match being televised on Channel 7. Thanks to the Sydney Swans and North Melbourne Football clubs for supporting this initiative. Read more on page 5.

Razzamatazz - Saturday 12th May 2012

Time – to be advised by email to all who register. Venue: Festival Hall, 300 Dudley Street, West Melbourne We hope that tickets to this live comedy show will be available to us again this year. If you would like to register your interest so we can order tickets for you when they are available, please email Lynette on lynette.mccoullough@heartkids.org.au or telephone 9333 1586 giving details about number of tickets required. Each child and adult requires a ticket, no matter what age. For further information: http://razzamatazz.net.au a Sponsored by the Immune Deficiency Foundation of Australia (IDFA), rs not-for-profit organisation that provides support for children, teenage families. their and ies deficienc Immuno Primary and adults who have

HeartKids Vic 1990’s Special Interest Group

Annual Get-Together - 11am-2pm 26th May Venue: Pancake Parlour, 550 Doncaster Rd, Doncaster (approx 500m on the city side of Westfield Doncaster) If your family members were involved with HeartKids Victoria in the 1990’s, you and/or your young adult HK are welcome to join this annual Get-Together. RSVP to Margaret 0428 584 408 or email: margaret.patullo@heartkids.org.au

HeartKids’ Night of Nights - Friday 25th May

Fundraising event run by the Rotary Club of Tullamarine Venue: Ultima Reception Centre, cnr Keilor Park Drive and Ely Court, Keilor Time: 6.30pm for 7.30pm start. See flyer on page 19. Tickets: $100 each Dress Code: Evening wear, dress to impress Tickets obtained by contacting Conrad D’Cunha 0434 609 520 or by contacting the HeartKids office on 9329 0446.

Deniliquin Family Camp – unfortunately this camp, which had been planned for March, had to be cancelled at short notice. Our apologies for any inconvenience caused to those who registered.

Entertainment Books We are pleased to announce that we’ll be selling the 2012- 2013 Greater Melbourne Entertainment™ Books as a fund-raiser for Heartkids Victoria/Tasmania. Entertainment™ Books are packed with hundreds of up to 50% off and 2-for-1 offers for the best restaurants, cafes, hotel accommodation, attractions and activities. We are selling the Greater Melbourne $65, Geelong, Surf Coast & Ballarat $55 and Tasmanian $60 Entertainment Books, all full of valuable offers valid until 1stJune 2013. So you can choose what you want to do and when you want to do it. You can order and pay online: https://www.entertainmentbook.com.au/orderbooks/180y947

or complete an order form (available on our website: www.heartkidsvic.org.au).

HeartKids ‘Capture a Heart’ Gala Ball

Friday 15th June, 7pm -12am

Venue: Savoy Ballroom, Grand Hyatt 123 Collins Street, Melbourne MC: Wilbur Wilde and Rhonda Burchmore Tickets: $190 per head or $1800 per table of ten See flyer on page 5 for Ticket Booking details. For more information phone 9329 0446

Run Melbourne - Sunday 15th July

The Age Run Melbourne offers participants a halfmarathon, a 10km run and a 5km run or walk starting and finishing at Federation Square on Sunday 15 July. Please join our HeartKids Team with some of our celebrity ambassadors and fundraise for HeartKids. Our team is “HeartKids Victoria”. There is also a Kids Run for children aged between four and fourteen years old which will be held at 10am on SATURDAY, 14 JULY (the day before the main event). The Kids Run is a 3km off-road untimed run around the banks of the Yarra. All children will receive a medal for participation and a showbag of goodies at the finish line. http://www.runmelbourne.com.au/

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HeartKids Australia Teen Camp Thanks to Paige and Jaden, two of this year’s campers, for sharing their Teen Camp experiences. Paige told us: This year the HeartKids Teen Camp was held at the Broken Bay Recreational Centre, Hawkesbury River in NSW. We were all excited to see our old friends and meet new ones. When we arrived at the ferry which would take us to the island campsite, we all hugged, cheered and greeted everyone. On arrival at the island we all sat and listened to the camp supervisors and the camp manager who explained things to us, such as how breakfast, lunch and dinner would work. Once that was done we were given our cabins according to our age groups. The cabins all had Australian bush names. Saturday was an activities day - there was Abseiling, Rock climbing, Ropes course, Archery, Volleyball, Canoeing, Swimming and much more. Unfortunately the morning session was interrupted due to the weather. After lunch we went back to the activities and had a lot more fun because it didn’t rain again. On Saturday night we had a special night with a Rockstar theme - IT WAS SO MUCH FUN! We had karaoke and a best-dressed competition. When we went to the zoo on Sunday it was very hot. We watched the bird show and seal show. The seals were amazing!!!! Then on the Monday we had to say goodbye to each other which was very sad, but we had lots of fun and we cannot wait till the 2013 camp!

Heartfelt thanks to this year’s Teen Camp sponsors:

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HeartKids Australia Teen Camp Jaden has written a blog titled ‘Heartkids Teen Camp 2012 - my nudge for normality’. Here are some inspiring extracts. You can read the full article at: http://jadengail.wordpress.com/2012/01/26/heartkids-teen-camp-2012-my-nudge-for-normality/ You know you are different when you are growing up. You might be blonde while all the girls in your class are brunette. You might like Johnny Depp while everyone else is swooning over Orlando Bloom. Everyone has a personality and likes that let them stand out in a crowd. I’ve always known I was different from the 26cm scar down my chest. The one that people can see when I wear my school uniform. Where they can stare at it when I have my swimmers on and ask questions about it. The looks. The tears. The laughs. All aimed at me because of one, measly scar. All my life I fought to be who I am. To love myself and the scar that no one else could learn to love. I wanted to find someone who understood everything I went through and I did. Thanks to one amazing organisation. For the second time I rocked up to the Sydney airport and everything just fell into place. Hugs and tears and laughter and smiles were shared around as I found my old friends. As the bus took us to our destination everything, once more, slowly sunk in. I could be me. I had this scar that 150 other kids around me had. We could wear our bikinis and board shorts and compare the scars that were drawn on our chests. Ambassador for HeartKids, Christian, was once again at camp as a supervisor. If I could choose someone who has inspired me to be a better person, to never give in and to just wake up each day and smile, it would be him.

One thing he said that stood out was the fact that, no matter what, we have 150 other campers from around Australia who will be behind us through everything. When we feel like nothing is right and no one understands, look at the kids from camp and KNOW that they support you through everything. Nothing can or will express how much of a better person I felt after his speech, how much more united I felt with every other person in the room. HeartKids Australia Teen Camp is not just a camp full of kids with something in common. It is a family. A family where everyone can be normal for just a weekend. Where we can all laugh and joke about us being heart kids. About stories we tell our friends and peers of how we got our scars. Whether it be from a ‘shark attack’ or ‘defending our house because of an insane intruder who broke in’. We can laugh about it. We call the siblings ‘norms’ and tell them they have to run around to get the ball because ‘we have a heart condition’. It’s a place where we can all have our ‘zippers’ showing and smile about it. Words cannot express how much this camp means to me and how much every piece of support from the supervisors, nurses and other heart kids means to me. They are all a big part of my life. My second Family. Without them, I would NOT be who I am today. This blog is to thank HeartKids Australia for everything they do. It is also to show other kids with Heart Defects around Australia that you can be normal! Sometimes, we just need a little nudge. HeartKids Camp was my nudge, it could be yours too.

More Details About... HeartKids Cup

, on During round 4 of the AFL season and ns Swa ney Sunday 22 April, the Syd for play will s club ll North Melbourne footba ng bei ch mat the the HeartKids Cup with televised on Channel 7. reness The day will be used to raise awa HeartKids for childhood heart disease and team will and the spokespersons for each eigh and be Swans co-captain Jarrad McV HeartKids North Melbourne legend, and Ambassador, Glenn Archer. The game will provide us with an print opportunity to use television and and ad Jarr e hav to ch coverage of the mat ids. rtK Hea and CHD Glenn speak about ns, North We wish to thank the Sydney Swa Glenn and ad Melbourne Football clubs, Jarr and way this for agreeing to support us in an Cup ids agreeing to make the HeartK annual event.

join us & together create a brighter future for heartKids

date Friday 15 June time 7pm – 12am venue Savoy Ballroom Grand Hyatt 123 Collins St MELBOURNE mc Wilbur Wilde & Rhonda Burchmore entertainment Big City Beat Renowned Speed Painter & Celebrity Artist Brad Blaze

$190/ticket or $1800 per table of ten For more information call 9329 0446 To book tickets go to our website or

www.trybooking.com/21828 Gala Ball poster kindly produced by:

www.heartkidsvic.org.au

Gala Ball


Heart Children ..... Starting school……… I used to be little, but not anymore. Tomorrow I’ll get up and walk out the door. I’m going to school -- it’s the first time for me It’s great to be big, but I’m scared as can be. My tummy’s in knots. Do you want to know why? I’m thinking that maybe, just maybe, I’ll cry. When Dad leaves the school and I’m there all alone, I’m thinking that maybe I’ll want to go home. But wait -- Mommy said I’ll play lots of new games and meet lots of friends -- I can learn all their names. The first day of school, oh there’s so much to do~ There’s painting and books and a big playground, too! I used to be little, but not anymore. Tomorrow I’ll get up and walk out the door. I’m going to school -- It’s my first day, you see. It’s great to be big! I’m so glad that I’m me! (Author: Unknown)

Olivia-Rose Green

Olivia-Rose was born with Wolff-Parkinson-White Syndrome and SVT. She has started High School this year and is pictured here on her first day at her new school.

Ben Jackman Ben has started at Camberwell South Primary School this year. Here he is in his new school uniform.

Charley Burgess

Charley began at school this year and is seen here wearing her school uniform.

Tom Franklin

She is going very well and is pictured with her little sister Addison.

the Tom looked just like all y of da t firs other kids on his ver ne uld wo u kinder and yo art he a s ha know that he condition!

Lucas Taranto

This year Lucas has started three year old Kinder at YMCA and he’s loving it!

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Maxwell Pini

This photo was taken of Max on his first day at three year old preschool.


..... Achieving Milestones Cara McKinnon

Jade Grant

Jade is a happy and healthy girl who started school this year. She is pictured here with her big sister Lily and little sister Skye.

Arlyn Radford

Arlyn has started at three year old kinder this year.

Noah Hartney

A photo of Noah on his first day at Romsey Kinderga rten. Four year old Noah ha s mitral valve stenosis an d has to date had three open heart operations.

Here’s a photo of Cara on her first day of high school. She is loving high school and also enjoyed attending her first HeartKids Teen Camp in January this year.

Corey Moore

James Harbour

This is a great mileston e for Corey - his first day at preschool.

Here’s four year old James on his first day of kinder.

Kyan Douglas

Ryan Maddocks Ryan started in Prep at Timbara P-9 College this year. He is making friends and loves his new teacher. His little sister HK Molly wishes she could join him!

This is Kyan on his first day of three year old preschool with his big brother Ethan. He loves painting, pasting, playing outside and discovering all the new toys at preschool.

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MonashHeart News Paediatric Murmur Clinic It is a very exciting time for us as we commence a new and innovative clinic within MonashHeart.

 

The paediatric murmur clinic runs each Thursday afternoon from a dedicated clinic room at MonashHeart Clayton, with review by a children’s heart specialist – a paediatric cardiologist. The paediatric murmur clinic facilitates the timely assessment of children with suspected heart murmurs. We anticipate it will also alleviate pressure on our general Monash Children’s Wednesday afternoon paediatric cardiology clinic.

 

In just a few weeks, we can see that it has already shortened the time that many children wait for assessment by several months. A referral is required from a general practitioner to attend the clinic. For referring doctors, an on-line referral form is being developed and will be available very shortly through the MonashHeart website. With the paediatric murmur clinic we have incorporated a wonderful fast track model of care, including access to a heart ultrasound (echocardiogram or ‘echo’) for any urgent cases that same afternoon, but also early echo appointments within days at all three of our three sites,Clayton, Dandenong and Casey, where we perform echoes on babies and children.

Young Riley with his mother Jody attending the first Paediatric Murmur Clinic with Associate Professor Sarah Hope

To learn more, see our award winning website: www.monashheart.org.au

Feedback from parents is most appreciative, helping to allay fears and concerns.

HeartKids Support at Monash

Starlight Captains at the ashHeart HeartKids Afternoon Tea, Mon

HeartKids Support Coordinator, Sherrie McDonald, with Angela and Baby Ruby

HeartKids Afternoon Teas

IN HOSPITAL

A special hello an d our very best wishes to all the heart ki ds who have been in hospital in the last three months.

Parents, kids, parents-to-be, inp atients or outpatients, please join HeartK ids for afternoon tea and a chat. Wednesdays 1.30pm - 3.30pm

Monash Children’s Clinic, Special Medicine Centre (next to McCulloch House ) 246 Clayton Road, Clayton

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The Royal Children’s Hospital RCH patients launch a love affair with reading Patients and staff at The Royal Children’s Hospital (RCH) swapped bandages for books and stethoscopes for stories to launch ‘National Year of Reading at the RCH’ on Valentine’s Day. The RCH signed up as a partner of the 2012 National Year of Reading, joining state, public and school libraries, and community groups around the country in an initiative that promotes reading and literacy and inspires Australians to become a nation of readers. The hospital’s atrium, Main Street, was transformed into a Literature Lovers Lane with visits from celebrity children’s authors, surprise guest appearances from popular book characters, word games, installations and performances that celebrated a love of reading. Felice Arena (author of Specky Magee series), Michael Wagner (author of Maxx Rumble series) and author and illustrator Jeanette Rowe with sidekick SmartyCat performed for patients and visitors throughout the day.

Patients were serenaded by roving musicians playing love songs, before tucking into love-themed cupcakes. A giant Valentine’s Day card was quickly filled with messages from children, young people, families and staff, sharing what they ‘love2read’, the catchphrase of National Year of Reading. There were also opportunities to put artistic skills to the test, with badge and bookmark making workshops and calico book bag screen-printing.

RCH Education Institute Director, Glenda Strong, said the hospital was thrilled to be a partner of National Year of Reading. “Our teachers are adept at creating exciting learning opportunities in a non-school setting that speak to children and young people as ongoing learners, particularly when a child’s engagement in formal education may be compromised by a health condition,” Ms Strong said. “By celebrating National Year of Reading, we highlight the value of reading as an important life skill for the whole hospital community. We look forward to immersing the hospital in a culture of reading throughout 2012 and beyond,” she said. The RCH Education Institute is looking forward to continuing celebrations of National Year of Reading with a wonderful program of activities planned for the entire year. Thanks to the RCH Education Institute for providing this article

HeartKids New Support Lounge

Suite 310, area at our main office located at We now have a Support Lounge Royal Women’s Hospital. 55 Flemington Road - opposite the a Royal Children’s Hospital and has The lounge is a short walk from the toys ’s dren chil s, a great supply of DVD comfortable couch, television with store lities and a freezer for families to faci ing mak and activities, tea/coffee some frozen meals while they are staying at RCH. We will use the lounge for family information sessions and working bees. Feel free to drop in for a break from the hospital. To make sure there is someone in the office, call us before you come: (03) 9329 0446.

RCH Morning Teas All ward, ICU and outpatient families are welcome to join us for morning tea, now held on both Tuesdays and Thursdays from 10:30am - 12:00pm in the Parent Lounge on the 3rd Floor. We look forward to seeing you there!

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New RCH Useful Information In November 2011, patients and staff moved into the new Royal Childr en’s Hospital (RCH) on Flemington Road in Parkville, Melbourne (right next door to the old site).

Here’s some useful information about the new hospital, including the

Koala – Cardiac Surgery

Family Resource and Respite Centre

Each level of the hospital has a theme inspired by Australian flora and fauna, and each ward is called the name of a native animal or plant relating to that theme. The cardiac ward is called Koala – Cardiac Surgery, and is located on Level 3 – Tree Tops.

The Family Resource and Respite Centre provides a quiet, friendly, relaxing area within the hospital for families and carers, away from the bustle, noise and stress of the hospital environment. It is a non-clinical area of the hospital and provides the following resources and services:

Koala ward provides care for patients, ranging from newborns to adolescents, with cardiac and renal conditions. Care includes cardiac surgery, medical therapies, renal transplantation, electrophysiology and peritoneal dialysis. The RCH is the National Centre for Cardiac Transplantation, Pulmonary Hypertension and one of two National Centres for Hypoplastic Left Heart Syndrome.

Business centre—internet, email access, faxing, copying and scanning documents

Quiet room for sleeping or private rest periods

Private cubicles for breastfeeding or expressing breast milk

Toilets

Baby change facilities

Meeting room

Kitchen and meals area

Lockers and day storage for large bags and suitcases

Direct access to the Great Garden Court outdoor children’s playground

Mobile phone chargers

Ironing board, iron and sewing kit

Library—all ages—borrowing facilities

Access to Centrelink and financial counselling

Portable DVD players and DVDs for loan to inpatients

Digital camera and photo printing—for loan to inpatients

Emergency care boxes with items such as toiletries and clothing

Maps and shopping guides

Patients admitted to Koala ward come from all over Victoria, interstate and overseas. Koala ward has 22 beds and 90 per cent of rooms are single, which helps with privacy, noise reduction and infection control. Visiting hours are 10am–12pm and 2–7.30pm. Parents and carers are welcome to visit at any time and one parent/carer is encouraged to stay overnight by the bedside. Koala has ‘quiet time’ between 12pm and 2pm, during which time we minimise medical procedures, visitors (including siblings) and general noise. Only parents are allowed at this time to encourage a time of rest for all patients, which is important for recovery. Please help us to keep this period of time as a period of rest for all patients, including your own child.

Cardiology outpatient appointments The majority of outpatient appointments now take place in Specialist Clinics—a central, easy-to-access area off Main Street on Ground floor – Beach. Cardiology is located at reception desk A3. Specialist Clinics has separate waiting areas for each of the six desks, an outside space and an open air meerkat enclosure. The cheeky and inquisitive meerkats are cared for by Melbourne Zoo staff and provide entertainment, distraction and a learning experience for patient and families while visiting the hospital. The hospital has many flexible waiting areas and things to see and do, including the aquarium, various retail and food outlets, gardens and play areas. The new patient pager system in Specialist Clinics allows you to enjoy these spaces while waiting and alerts you back to the waiting area when it’s time for your appointment. Please bring the following to your appointment:

areas you’ll visit most.

Reception area, staffed by volunteers Lounge area

Telephone 9345 4662

Location North Building, Ground floor – Beach

Medicare Card

Opening hours

Child Health Record

Monday–Friday, 9am–8pm

Current referral

Weekends, 10.30am–3.30pm

If your child is due for an appointment please telephone Specialist Clinics on 9345 6180.

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New RCH Useful Information Wadja Aboriginal Family Place Wadja Aboriginal Family Place is a culturally sensitive service for Aboriginal and Torres Strait Islander children and their families. It provides a quiet space away from the wards where families can come for a yarn, a cuppa or just to sit in our family room and relax. Staff are available to provide social, cultural and emotional support during your child’s admission and treatment.

Telephone

Payment and exit Payment must be made at one of the car park payment machines before you return to your car. Pay stations are located at:

Main Street, Ground Floor – Beach

Emergency, Lower Ground – Underwater

Yellow lift lobby, Basement 1 – Underground

Yellow lift lobby, Basement 2

Yellow lift lobby, Basement 3

9345 6111

The car park exit takes you on to Flemington Road. Exit 1 is left hand turn only. Exit 2 is left or right hand turn.

Location

Lost tickets

North Building, Ground floor – Beach

If you lose your ticket, you will need to pay a full day casual rate. This is to be paid at the Security Office, located on Lower Ground – Underwater, next to Emergency. You will be asked to present your driver licence.

Prayer and Meditation – Murrup Biik Prayer and Meditation – Murrup Biik is a calm, welcoming space for prayer, meditation or quiet reflection for people of all faiths, or none. The space also includes a serene outdoor area.

Telephone 9345 5522 (ask to speak to a chaplain)

Location North Building, Ground floor – Beach

Starlight Express Room The Starlight Express Room is a fun, friendly, safe space, with lots of daily entertainment for patients and families. Ask the Captain Starlight team about weekly activities.

Telephone 9345 7991

Location North Building, Ground floor – Beach

Discount parking All current patient discount entitlements still apply in the new hospital. But please note that discount cards issued to patients/families in the old hospital are not valid for the new car park. Patients/families who are eligible for a discount on parking will be issued a daily ticket. In order to receive your daily discount ticket, please take a ticket upon entry to the car park, and take it to the Security control room, Lower Ground – Underwater (near Emergency) where you will swap the entry ticket for a discount ticket. You will then use the discount ticket to pay for your parking at a pay station and exit the car park. You are eligible for a discount parking card if your child receives a disability allowance (e.g. Child Disability ‘CD’ on the patient’s Health Care Card or Disability Support Pension ‘DSP’ on the Pension Card), and is admitted to the hospital for more than 48 hours. You may be eligible for a discount if your child is an inpatient for an extended period. These cards are for primary carers of patients and not for their extended family or visitors.

Security office

Car parking

9347 4018

Dropping off

Location

There are two drop-off zones. One is located at the main entrance and the other is the Emergency area. Parking in these areas is strictly prohibited.

Parking Enter from Entry 1 or Entry 2 on Flemington Road. To gain entry, take a ticket from the ticket box at the boom gate and the gate will open. There are three levels of parking—B1, B2 and B3. Indicator boards will tell drivers when a level is full or how many vacant spots are available on each level. The car park is open 24 hours a day, seven days a week.

Disabled parking Limited parking bays are available for those with an eligible disability parking permit, which must be displayed at all times.

East Building, Lower Ground – Underwater, next to Emergency

Open 24 hours, seven days a week

Retail and food The range of food and retail outlets offers convenience and the choice of many different food and beverage options. They are all located on Ground floor – Beach, in (or just off) Main Street.

Trading hours vary, but many are open from 6.30am to 10pm daily. Vending machines are located on levels 1–5 of the hospital. This article was written by RCH Corporate Communications

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Branch News

Congratulations!   

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Congratulations and our very best wishes to all these

New Babies

 families who have welcomed new babies in recent months.  Jon & Jess Guest welcomed HK Kaylee on 9th October, a baby sister to Erin, Billy, Christopher, Anna and Andrew.

 The Winsor/Morgan family have a new little baby, HK Tyler,

 

born 27th October. He is a brother to Jaden.

Coster & Forrest family have announced the arrival of their daughter, HK Mia, who was born 3rd November 2011.

Belinda and Travis Dennehy welcomed Layla to their family on 7th November 2011, a little sister for HK Cohen.

The Kreuger/Benoit family announcd the safe arrival of HK Caitlyn on 18th November, who is a sister for Sean.

The Tomeo/Barbu family have announced the arrival of their son. HK Levi was born on 18th November 2011.

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 Aaron & Kelli Dawber have a baby boy, HK Harrison, born   

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12th December, a brother for Caitlin and Ebony.

Simon & Rhiannon Rodgers have announced the arrival of their son, HK Caleb Nirvana, born 13th December 2011.

The Walton family have announced the arrival of their new baby boy HK David William, brother for HK Grant. David was born on 4th January 2012.

  Nathan & Kate McDonald welcomed Samuel Nathan, born  on 6th January, baby brother to Noah and HK Abigail.  The Glenny family have a new baby daughter, Uaria Eva,  born 6th January. She has a brother Addicus and  sisters HK Celeste, LeNoir, Sâtine & Jàime-Caila.   The McPhan/Bailey family have announced the arrival of  HK Reuben, born 24th January, a brother for Saffron.  Mathew & Kirsten Pini are excited to have a brother for  HK Maxwell!. Patrick was born on 27th January.   Scott & Kylie Baker have welcomed their new little  daughter, HK Abigail (Abby), on 2nd February. She is a  miracle baby with nine siblings in heaven.  John and Marianne Walsh are thrilled to announce the safe   arrival of Eden Grace, born 15th February. Cherished little sister for Riley and Heart Angel Jackson.   Louis & Emma Royer had a new baby boy, Etienne Francois on 27th February. He is a little brother for HK Guillaume.   The Thomson/Airs family have announced the safe arrival of their son, HK Eli, born 7th March, a brother to Hunter.   David & Janita Felici have welcomed a son, Aidan Joseph,  born on 7th March, little brother to HK Isabelle.    In each edition of the newsletter 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  newsletter, please send us the details.        

Happy Birthday!

A very ‘Happy Birthda y’ to all the heart children and their fam ily members celebrating birthdays during Autumn! 12

HeartKids 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 newsletter and watch the branch news on our website: www.heartkidsvic.org.au Select Members/Events/Branch NetworkCoffee Mornings or follow us on Facebook for event dates. New Coffee Morning - Bundoora On the first Tuesday of every month, starting on 1st May 2012 at 10.30am – 12.30pm, we will hold a coffee morning at Wriggle It Indoor Play Centre and Cafe, at Unit 2B/445 Grimshaw Street, Bundoora. It is located next to the Greensborough bowling centre. Please note that no food & drink is to be brought onto the premises, and socks must be worn in this venue. To register, please contact Amy Heafield on amy.heafield@heartkids.org.au or 0410 179 135. Bendigo Our Bendigo group held a picnic in the park sponsored by Red Rooster on Sunday 19th February. Thank you to Red Rooster for providing the lunch and to Natasha for organising this event as her first get-together since becoming Coordinator. Families had a very enjoyable day in the park. The Bendigo Branch has recently received a donation from a local business to assist with awarenerss and activities in the local area - you can read the story on page 22.

Here are some photos of recent meetings at Bendigo, Geelong, Shepparton, Albury/Wodonga and Tullamarine


News from Tasmania Donut Decorating in February

of HeartKids. Donut King Eastlands hosted a Donut Decorating Day in support It was a great success, raising $560 in 5 hours.

HeartKids Tasmania Car & Bike Show 2012 presented by Aussiecoupes.net at Josef Chromy Wines, Feb 5th 2012 This year the Car & Bike Show was held at a beautiful venue. It was a great day, despite the weather varying from extremely hot temperatures to sprinkles of rain, and then about an hour before the close, pouring with rain! It was wonderful to have over 550 display cars there on the day, with vehicles from Victoria, NSW and Queensland attending. Our heart-felt thanks to the Aussiecoupes.net club for hosting and organising this fantastic event. We appreciate the participation of all the supporters who together have made the day so worthwhile. To all the volunteers we say ‘Thank you’ for helping out - in particular we thank Claire and Katrina with their group from the North West of Tasmania, Kim Grace and her helpers on the HeartKids Stall, and all the other Gate Attendants, Jo and others from Hobart, and my family and friends. Thanks to the MRA ( Motorcycle Riders Association) who donated $500 to HeartKids. Aussiecoupes.net were thrilled to donate over $6000 from the day. Kylie Smith, HeartKids Launceston Coordinator

Put this date in your diary for next year: February 3rd 2013, Josef Chromy Wines

Our thanks to the Chandler family for providing this great photo www.aussiecoupes.net National Automobile Museum of Tasmania Josef Chromy Wines Salters Hire Tamar Valley Woodfired Catering Bowden’s Own Shannons Tasmanian Copper & Metal Art Gallery

Northern Midlanda Council Southern Cross Television The Examiner Coates Hire Cashion Contracting Builders Kylie Hamilton Photography Coffee Buzz Coffee Face Painting & Body Art

Special thanks to Kylie Hamilton Photography for these great photos of some highlights of the 2012 Car & Bike Show

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James Archer Harbour - HLHS After a relatively uneventful start to my pregnancy I booked in to have my routine 20 week scan. They couldn’t get a good picture of the heart then or at numerous scans over a number of appointments so I was told I would need to see a specialist. With my husband Brendan, I saw the Specialist in his rooms at Monash Medical Centre. This, as it turned out, was D DAY!! We were given the definite diagnosis that our baby had Hypoplastic Left Heart Syndrome and would require several surgeries from birth to survive. Our options were - we could go through with the surgery, not have the surgery and let nature take its course, or have a late term termination. In our minds however there was only one decision - that was to give our baby every chance at life! I moved down to Monash Medihotel in June as I had started to have some early labour pains. These stopped about 48 hours later and I spent the next three weeks in the Medihotel, awaiting the big day which finally arrived on 3rd July, 2007. I was induced at 9am and things progressed and progressed, but I didn’t! James Archer Harbour was eventually born via emergency caesarean at 18.18pm on Wednesday 4th July, 2007, weighing an impressive 4.5kgs. He was taken straight to NICU at Monash and transferred to The Royal Children’s Hospital (RCH) later that evening. I was able to see him before he left, thanks to the very kind NICU staff and NETS Team bringing him to me on his way out!! Surgery was scheduled for Friday 6th July. We met with Dr Christian Brizard on the morning of the surgery - what a wonderful man!! He was so positive and made us feel a lot better about our decision to go ahead with surgery. We spent the day alternating between the Family Resource Centre and Parent Accommodation, trying to keep our minds busy. The call finally came through at 5pm to say all went well and we could see James in about an hour. We were told that the next 24-48 hours were critical and would determine whether or not James would pull through. We got in to see James at 6pm and what a shock! Even though we were pre-warned that his little chest would be open after surgery, nothing prepares you for it. He just looked so sick! James spent a stressful three weeks in ICU at the RCH. I’ll never forget the hours spent sitting next to his cot, praying, expressing milk, praying, crying and wishing I could change places with him. Eventually tubes and lines began to disappear and every one NICU (Neonatal Intensive Care Unit) NETS (Newborn Emergency Transport Service)

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there. Once again we felt very reassured after speaking to him before the surgery. Another BRILLIANT man, and thank God we’ve got him at RCH!! When we eventually got in to see James, we were pleased to see that this time they were able to close his chest straight away. James had a bit of trouble coming off the oxygen again after this surgery which was possibly due to a slight cold that he had had in the weeks prior to his operation. But after a couple of days he was sent up to 7 West. We were ecstatic that he was moved so quickly after spending three weeks there after the Norwood. After the BCPC we discovered that James had a paralysed vocal cord, sustained as a result of the intubation during surgery. have a few complications after his Norwood This compounded his feeding problem. Procedure, the most serious being a He was discharged and allowed to come paralysed diaphragm. This had to be home on Friday 2nd November, 2007. repaired in surgery. The big day came and What a wonderful day! After saying we moved up to the ward on Tuesday 24th our many goodbyes, especially to the July - yay!! It was fantastic getting him up fantastic nurses and doctors on 7 West, there as we felt like he was getting better. to our wonderful social worker, Alison It was also great because we felt as though Baillie, and to the chaplain (unfortunately we could do more for him on the ward. It a Collingwood supporter), Tom Rose, we was also more conducive to having family were on our way home!! visits, especially from his big sister Abbey. It was wonderful to see him so well. We She is autistic so we tried to limit her ICU had to remind ourselves that he was a sick visits as much as possible, but once in 7 little boy and it was only during swimming West she was able to visit more often. lessons that his blue lips reminded us. James began to get better however his When I reflect on the time we spent from feeding was a major problem. James June to November in hospitals, I have wouldn’t drink. We spent hours and to thank my Mum and Brendan’s parents eventually months, trying breast, bottle, for all the support and help in having every different teat, syringes, everything. Abbey for us, and bringing her in to see Eventually, slowly, he would drink a very us regularly. Missing our little girl was one small amount from the bottle. And so the of the hardest things to deal with when feeding saga began!! Little did I know the we stayed at the hospital. As a Mum, I felt months of feeding battles that lay ahead! torn in two! But knowing that she was with We had a couple of hiccups before we loving grandparents made it a lot easier to got to go ‘home’ to Ronald McDonald deal with. house. James developed a small infection in his chest wound and it started to open slightly, therefore he had to go back into surgery and have his scar debrided and re-sutured. Unfortunately, he also had to be re-sutured after his diaphragm surgery. James just seemed to take it all in his stride though. Finally after six weeks James was allowed to go home to Ronald McDonald House until his 2nd heart operation, scheduled for 11th October. We had six weeks over at Ronnie Mac. What a fantastic place!! It allowed our family to all stay together and be close to the hospital. James’ second operation, the BCPC, was on the 11th October, 2007. We met with Dr Yves d’Udekem before the surgery and he explained the procedure and advised Top: James with his sister Abbey that he was also planning to do a slight James and his red guitar repair to James’ aortic arch whilst he was meant a step closer to moving up to 7 West. The day before he was moved up to the ward, Brendan and I got to have our first cuddles with James (albeit on a pillow and too scared to move!!) But it was a cuddle just the same and we were rapt!! We did

Photo courtesy of Verve Photography


On Wednesday 21st September 2011 James had his Fontan surgery. He went into surgery at 8am. It was a long operation, while we waited for what seemed like an eternity. We got the call at about 5.30pm to say that we could see him in about one hour. So in hospital time that meant we got to see him at about 7.30pm! It was the longest day in history.

It was still so hard to see James all covered in tubes and bandages, even though he was bigger this time. We sat with him in ICU until about 1am when the doctors were finally able to take the breathing tube out. After this he settled very well and the doctors said they wanted to keep him asleep until morning then slowly wake him. They sent us ‘home’ to Ronnie Mac for a sleep. My phone rang at 3am asking me to come over as he had woken and was asking for Mum. When I got there his nurse told me he was asking for me and saying some numbers with his croaky little voice. The numbers turned out to be our phone number!! He was asking the nurse to ring me!! How adorable is that! So I stayed with him all night. Next morning he was asking for drinks and something to eat. Unfortunately due to his major surgery he was on very strict fluid restrictions so he was only able to suck tiny amounts of fluid from a cotton bud. He did improve quickly on Thursday and was moved up to the ward at about 3pm. Then the fun started! Due to the copious amounts of morphine he was on, he became extremely constipated and extremely grumpy! We ended up limiting his visitors as he really wasn’t up to it. He started to develop a temperature (39 deg) and the doctors were very concerned about an infection. So IV antibiotics were started on the Saturday. After eight torturous days of no bowel action, James was given an enema and

we had success!! Our daughter Abbey had come down for the day so we took her to the Melbourne show, while my mum spent the day with James. I thank God every day for having my mum there with us throughout it all. She was amazing as usual! James’ recovery was really up and down. He kept developing high temperatures and the doctors were concerned about

es Three photos of Jam t las ry ge after his sur ng year: in ICU; recoveri d an rd; wa the in m enjoying the play roo

Endocarditis but luckily it wasn’t that. He went another six days without a bowel action but we were finally able to convince him that he’d feel heaps better not holding onto it! After two weeks in hospital he started to deteriorate and was really miserable. He was in quite a bit of pain and very depressed. He wouldn’t tell the nurses or doctors where his pain was and it was a very difficult few days trying to work out what was slowing his recovery. After lots of tests they did a chest x-ray and discovered a Pneumothorax (air between the lung and chest cavity which deflates the lung). This is a very painful condition. So he went back onto oxygen which helped resolve it without the need for more surgery. After three weeks we were discharged to Ronald McDonald House and when walking in the door, he tripped on the carpet and opened up the bottom section of his chest scar! We didn’t actually know until the next morning when I went to change him and I noticed about an inch of his scar looked weepy. I panicked and thought it was infected. I rushed him back over to the hospital where they called the surgeons to have a look. This is where they informed me that it wasn’t infected – it was actually open. After much discussion they decided to bandage him up and keep an eye on it and hope it would heal up on its own. They put him on some very strong antibiotics to ensure

it wouldn’t get infected. James has always taken medication very well without any problems, but he could not keep these antibiotics down. He had to have them four times a day and he vomited every single dose, as well as everything else! We begged the doctors to put him on something else but they were adamant that he had to have those, so we struggled on. We finally got to go home on Saturday 8th October. When we got home after a full day of vomiting, RCH suggested we take him to Latrobe Regional Hospital and have a nasogastric tube inserted to help him keep his medication down. He wanted his Nanny to come too, which I look back on as a blessing because they had a lovely time together that night planning future adventures during the six hour wait. Mum had such a way with James - they were so close. Unfortunately I think it was here that mum caught the horrible virus that actually took her life a few days later. As mum had COPD (chronic obstructive pulmonary disease) she had very weak lungs and when she got such a bad cold it immediately became pneumonia and after just two days of being unwell mum passed away on Wednesday 13th October. Needless to say we were all in absolute shock over this and probably still are, to be honest. James continued to improve every day. He managed to keep the antibiotics down and got to take the nasogastric tube out on the day of Mum’s funeral. Since then his energy levels have gone through the roof. I think they have about tripled. At his last check up, his cardiologist actually joked that often the parents ask for the kids to be slowed down a bit after this surgery. I can see why! I can never really thank Dr Christian Brizard and Dr Yves d’Udekem enough for what they have done for our family. They are the reason we are a family of four and not three. We literally put our little man’s life in their hands and they came through for us. Thanks to the nurses and doctors on 7 West for caring for both child and parent!! We hope he continues to improve and I wanted to take this opportunity to thank everyone for your prayers and support. Written by James’ mum, Brooke Harbour

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James having fun with his Nan


HeartKids Australia News One of the key elements of the HeartKids’ Mission is to raise awareness. February is Childhood Heart Disease Awareness Month and this year we made a major effort to increase our presence in all forms of the media – TV, Press, Radio as well as social media.

We had a number of special campaigns running – Capture a Heart (on Facebook), the Wall of Love (RFG stores – Brumby’s, Donut King, Michel’s Patisserie, Esquires Coffee Houses, BBs Cafe, Big Dad’s Pies). Many heart child families took great pleasure in visiting one of the stores to take advantage of the special promotion of heart-shaped donuts etc, a portion of the sale going to HeartKids. The Capture a Heart campaign was a new initiative for us, using Facebook to run an on-line competition. It attracted 140 entries and was judged by Ken Duncan and a HeartKids panel of judges. Here’s the winning photo - see more details on page 18. There have been numerous stories about heart children in the print media throughout the country. We had advertising in Women’s Weekly and Woman’s Day. A number of heart children appeared on local TV and HeartKids and the Cole and Saunders families from NSW were the subject of a fantastic story on The Project (Channel 10). Lots of excellent exposure of the HeartKids story. The design for our new website was completed during January with the new look HeartKids Australia website (www.heartkids. org.au ) going live on February 1st. The new site is much cleaner with greater ‘interactive’ and visual content such as videos. All states will migrate to the new format over the coming months with new features such as an on-line shop being added as well. In the Summer edition I mentioned that our “Cuppa” Campaign was a great success with over $110,000 being raised. More importantly, it was also a great success as far as the participants were concerned with 84% looking forward to participating again in 2012. It was also interesting to find out through a survey that 76% of the hosts participated as a result of a personal connection with a HeartKids family – maybe it would be a good thing for us to publicise this to the general public as a fundraising activity? Let’s get more people involved in 2013!

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The Annual Teen Camp was held January 20th -23rd at Broken Bay on the Hawkesbury River (NSW) and was a great success with 130 Heart Teens attending. My thanks go out to all of the people who volunteered their time to provide medical support and supervision over the week-end – without their dedication and support this event could not take place. A special thanks go to Polly and Waz who took time out of their hectic schedule to welcome the kids to the island. I was most impressed by these wonderful young people who participated with energy and vigour in a wide range of activities from rock-climbing to Karaoke and Trivial Pursuit. I was particularly taken with the mutual support they provide each other – the teen camp providing the opportunity for many of them to catch up and renew their friendships forged at previous Teen camps. A post-camp survey indicated that 60% of the participants rated the camp as “Awesome” and 98% want to return next year! Importantly, I would like to acknowledge the support of sponsors Amway and the Black Horse Foundation which makes this camp possible – the former is probably well known to most people but Black Horse is the charitable foundation of Lloyd’s International Bank. 2012 has seen us expand our research funding into smaller projects which will deliver results quicker – the Grants-in-Aid Programme. We have funded 6 projects in 4 states to the tune of $240,500 this year. • Cardiac rehabilitation for HeartKids who undergo early surgery (Dr. S. Long) • The Australian and New Zealand Fontan Registry (Prof. Y d’Udekem) • Pulse oximetry screening for congenital heart disease in Western Australia (Dr J Ramsay) • iPS cell technology and the molecular basis of hypoplastic left heart (Prof. R Harvey) • Sharing success-Improving secondary prophylaxis for rheumatic fever in indigenous Australian children (Mr M Remond) • Getting to the heart of sudden unexplained death in children (Prof. C Semsarian) More information on these projects will be posted shortly on our website. Finally, I would like to thank you all for your support during my time as a ‘stand in’ CEO at HeartKids as I will be handing over to a new CEO, Jann Kingston, in March. I am sure that you will all welcome her to the HeartKids family and I’m sure that she will bring a lot of experience and energy to the role. Alan Bowden Interim CEO, HeartKids Australia


Reflections Heart Angel

Heart Angel Remembrance

Paige Berry 9th August 1995 - 19th March 2012

We remember these Heart Angels whose birth date or anniversary is in the Autumn months.

I cry in the morning I cry in the eve. Why when someone we love has to leave. My heart is breaking just waiting for that time. Where I say goodbye, my sweet child of mine. - Jeannette Berry

Supporting Grieving Adolescents school-aged teens should The first point of contact for our ortant that the school be their school counsellor - it is imp ncing then they can help understands what they are experie with coping strategies. Bereavement have very The Australian Centre for Grief and rting Grieving Adolescents” good resources – including “Suppo d_bereavement_support/ http://www.grief.org.au/grief_an dolescents g_a understanding_grief/supportin Bereavement The Australian Centre for Grief and www.grief.org.au Tel: 1300 664 786 @grief.org.au Email for counselling: counselling Grief Line: (03) 9596 7799 Kids Help Line: 1800 55 1800 Lifeline: 131 114

Birth Dates Kiera Ziegenhardt 2nd March 2010 Finn Adair 4th March 2006 Stacey Pye 18th March 1994 Portia Grimbos 22nd March 2010 Bryce McCartney 25th March 2011 Matilda Harrison 26th March 2009 Ashlee Buckton 28th March 2010 Noah Bannister 29th March 2004 Mary O’Keefe 1st April 2005 Emily Cook 9th Apr 1994 Alexander McGrory 13th Apr 2000 Darcy Bartlett 5th May 1992 Sarah Inkster 10th May 1992 Asha McNamara 16th May 2011 Raphaela Perrin 19th May 2010 Cameron Varro 30th May 2010

Anniversary Dates Matilda Harrison 1st March 2011 Emily Cook 1st April 1999 Noah Bannister 7th April 2004 Cameron Varro 10th April 2011 Jonathan McGrath 13th April 2008 Stacey Pye 7th April 2007 Max Barker 27th April 2008 Ethan Hanley 28th April 2010 Portia Grimbos 30th April 2010 Darcy Bartlett 30th April 2009 Bryce McCartney 19th May 2011 Amy Dawson 20th May 2010 Ashlee Buckton 23rd May 2010 Bryce Ibbs 25th May 2004 Mia Campbell 26th May 2010

Grief/Bereavement Websites:

work: Journey of Hope Grief Support Net g http://www.johgriefsupport.or .sidsandkids.org Sids and Kids on-line: http://www dren of all ages: Raindrop – Death education for chil http://iul.com/raindrop/ bereaved children, UK Winston’s Wish – the Charity for http://www.winstonswish.org.uk ww.dougy.org The Dougy Center, USA http://w Grief The National Centre for Childhood http://www.childhoodgrief.org.au ace.org.au Headspace http://www.headsp

Stephen Buckman 27th May 2010

Thinking of You

Our thoughts and prayers are with the families and friends of all Heart Angels in their time of loss.

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HeartKids Awareness Month During February we ran a number of campaigns to raise awareness about HeartKids. Several families shared their stories in their local newspapers, Glenn Archer’s TV and radio commercials aired nationally, Retail Food Group ran commercials and in-store combos supporting HeartKids Awareness Month. Our Facebook page featured “The Faces of CHD”. Families shared their children’s stories and photos. If you would like to view the album please click on Photos when you visit: https://www.facebook.com/HeartKidsVIC We also posted statistics about Childhood Heart Disease and inspirational quotes. We had an amazing surge in hits to our page over the month. These are some of the quotes used: Don’t look at my scars and feel sorry for me, look at my scars and be proud of what I’ve achieved If Congenital Heart Defects were like bicycles some would have a flat tyre; some would have a bell that won’t stop ringing; some would be stuck in low gear, or high gear; some would be completely back to front - and peddling would make you go backwards not forwards; some would have broken brakes and some would be missing bits altogether. You can take them to the mechanic who can get some of them running again - but they’ll never be quite as shiny new as the other bikes. And I know quite a few who have a unicycle!!! Happy International CHD Awareness Day We would like to thank all the families who shared their heart children ’s stories during HeartKids Awareness Month. Thank you for helping us inform more people about CHD. We remembered our angels and celebrated our survivors during February. CHD doesn’t just affect our children and their families for one month of the year - it is ongoing. Please keep raising awareness any way that you can.

Our Ambassadors Robbie & Glenn

Capture a Heart Competition The ‘Capture a Heart’ competition was run on the HeartKids Australia Facebook page. Contestants were invited to take a photo of a heart they saw in their everyday life whether it be something found in nature, in their city, town, home, business, school or something they created. The entries were up for public vote and the top entries shortlisted. The winner was selected by a panel of judges, including internationally renowned photographer, Ken Duncan. 1st Prize - Zoie Hickey for ‘Love bite’ Home Entertainment Pack: Sony Bravia 46” LED TV, TiVo Player, Sony Blu Ray Player and $100 Kmart Voucher. 2nd prize - Marsha Bennet for ‘Heartkids shine like the sunshine’ iPad 2 3rd Prize - Veronica Patterson for ‘Elly’s Heart’ Photo package: Canon Powershot A495 Digital Camera and a Selphy CP780 Printer

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Storm Ambassador Robbie Kearns & AFL legend Glenn Archer caught up recently to promote their charity, HeartKids. You can see more photos in the Storm photo gallery on their website. Go to the bottom of their Homepage and you will find them.

http://www.melbournestorm.com .au/default. aspx?s=home-old


Wonderful support! Melbourne Heart

bourne Heart providing tickets, Thanks to the generosity of Mel the opportunity to watch recent several of our families have had Melbourne Heart games.

Rotary Club of Tullamarine District 9800 Victoria Australia

Project Dovetail Kids

Day Out

ilies tail, three HeartKids’ fam Thanks to Project Dove at t Ou y Da vetail Kids enjoyed the Project Do rk. Gumbuya Pa fun p them having heaps of Bad weather didn’t sto , fire en m with a toasty op - there was a great roo ing, int pa e fac ent, awesome amazing live entertainm d Ad e! tim all of best clown jumping castle and the rk’s Pa uya mb Gu d an rty lunch that to showbags, a pa lling a fantastic day! animals and rides equa who made the day Thank you to everyone possible.

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Acknowledging.... 70th Birthday Party

Geoff and Thelma Glidden are pictured here with their grandson HK Joshua. They recently had a great day celebrating their 70th Birthdays together. They kindly arranged for their party to be a fundraiser for HeartKids, by asking their friends to not give presents but instead make a donation to HeartKids. They were delighted to raise $850 and would like to thank their local Michel’s Patisserie who helped sponsor this fund raising event.

Buninyong Primary Donation

Ang lese a Hea dsh ave

Hunter and Annika, the parents of heart child Addis, had very little knowledge about heart children when their unborn baby was diagnosed at the 20 week scan. They were fortunate to have support from close family friends, Michelle and Byron Hall (members of HeartKids from Echuca/Moama) whose son Corvan had had two lots of heart surgery and is now a “normal” healthy teenager. Before Addis was born Hunter’s friend Danial Pescott was so moved by Addis’ condition that he pledged to shave his long mane of hair for HeartKids. Addis, pictured here with his parents, was the guest of honour at the recent fundraiser! Thanks to all the supporters, $1409.00 was raised on the night, but most of all they raised AWARENESS. Addis’ grandmother, Alison Sedgwick said ‘HeartKids is not an exclusive club - it is a not-for-profit organisation run by ordinary people to help families in extraordinary circumstances’.

Run with Heart helps Tasmanian Heart Children ated in Amber Loone and Li Enniss particip ey mon e rais to race the Point to Pinnacle 00. $35 ing rais for HeartKids, efforts of Thanks to their generosity and the to able n bee has Claire Gluyas, HeartKids th Nor the h bot to ers provide TV/DVD play sey Mer the and l pita West Regional Hos e heart Community Hospital for use whil ECG and O ECH r thei ergo und children units to ilar sim vide pro to e hop We s. test other hospitals in the region.

HeartKids received a donation from a class of Grade 1 students from Buninyong Primary School. Karen Collum told us that her elde st son, Samuel, had open heart surgery in 2009 to correct the hole in his heart called an AVSD (Atrio-V entricular Septal Defect). Here’s Sam, 2nd from left, with som e of his friends enjoying ome yummy heart-shape d donuts. On the day the students brought along a donation to raise some money. It was a really great outcome for a class of 22 kids to raise $56. Thanks everyone!!

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Lemonade & L a m in g to n s

& Liana, Here’s a photo of Casey Maddison HK two young relatives of Watkins. stall and sold They held a lemonade ney for charity. lamingtons to raise mo dly donated kin ve As a result they ha s. $60 to HeartKid

Ballarat South Rotary Raffle 2012 Our sincere thanks to the Rotary Clubs of Ballarat South and of Highton for their support of HeartKids via their recent raffle. We also thank all the participants who bought or sold tickets, which has resulted in $3096 being raised for HeartKids. HeartKids send a big Thank You to Libby Gibson from our Geelong Branch who has coordinated the distribution of ticket books.


....Special Efforts! Stu art Bra ine Rot tne st Cha nne l Swi m for Hea rtK ids Vict oria

The HBF Rottnest Channel Swim is a 19.7km swim from Cottesloe Beach in Perth to Thomson Bay, Rottnest Island in Western Australia. Participants compete in teams of two or four, or for the extremely dedicated, tackle the crossing solo. The event has grown in popularity to become the world’s largest open water swimming event, attracting international as well as domestic competitors, and captures the imagination of the public and ocean swimmers alike. Other open water swims are longer, but travel from bay to bay, this event is unique in that it travels from one location to another, across the open ocean and a major shipping channel. One year a submarine crossed the swim field. Stuart Braine this year completed the swim solo to raise funds and awareness for HeartKids. Stuart said “I was fortunate to listen to a HeartKids father tell his story at the HeartKids Gala Dinner in 2011 and from that point I wanted to help people like him. As a father, I connected with this dad and then thought I could raise money while swimming the Rottnest Channel Swim”. Stuart’s effort was outstanding. Not only does the swim itself take the 2300-strong fleet between 4½ to 9 hours to complete. Its fierce swell and strong currents make it a harrowing journey even for the fittest of competitors. Stuart finished 11th overall and 7th male overall and swam up to 50kms per week in training. He also raised nearly $12,000 for HeartKids.

Stuart was cheered on by his family and friends who provided wonderful encouragement and logistical support.

Sp or ts m an ’s Lu nc h

In Australia, Lloyds International has a commitment to make a meaningful difference to the com munities in which they operate and do this through their charitable foun dation, the Black Horse Foundation . The Foundation focuses on three key areas: volunteering, fundraising and a payroll giving program. Sinc e the Foundation’s inception in 2006, it has contributed more than $4 million and hundreds of hours of volunteering to a long list of charitab le causes. On 24 November 2011, the Black Horse Foundation hosted a very successful lunch to raise funds for HeartKids and Red Kite. All up $16,500 was raised for HeartKids. The underlying theme of the lunc h was celebrating Melbourne as the Sports Capital of Australia and this was reflected in all aspects of the day. The entertainment include d a Q&A session with a panel of leading sportsmen from the four major football codes. Robbie Kea rns from the Melbourne Storm NRL team , Barry Stoneham from Geelong AFL team, Mitch Inman from Mel bourne Rebels Rugby Union team and Kliment Taseski from Melbou rne Heart A League football team . The event was hosted by sports com mentator George Donikian and included the auction of a range of sporting memorabilia. A big thank you to Simon Legg and his team at Black Horse Foundation for arranging such a successful day.

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Thank you for your recent gifts... Kevin & Beryl Featherston

Rhonda Rattray

Ben Ferguson (on behalf of the Peninsula Country Golf Club

Rotary Club of Highton

J & F Arrowsmith Geoffrey Ashton Memorial Donations

Scott Frew, Distribution Central

Simone Baker

Craig L Gilmore

F Bathgate

Geoff & Thelma Glidden’s 70th Birthday Celebration

Ararat & District Heartbeat Support Group

Betty Louise Bird Memorial Donations Wayne Bowden Deborah Bowling Shae Cater Cherish WL Clapp Julie-anne Compston Elizabeth Dann J Darling Donut King Eastlands Tamir Doron Hugh Duncan Fairy Dee Mrs Farley

Maria Gruber Harris Family V Hopkins MR & JA Kennedy Warren Larsen Colleen Lockwood Robert Loh Melbourne Heart Chelsea Miers Katsura Narusawa S & S Offer R & B O’Sullivan Project Dovetail

P Ruane Pat Ruane’s 80th Birthday Donations St. Catherine’s School Alison Sedgwick Shamrock Hotel, Alexandra Joseph Stramandinoli Peter Tang Mark Terrill Tina Terrill Fr Donald Thomas P C Walkley Kiara Ward Memorial Donations Marnie Watson Jodie White Chris Williams Darren & Rebecca Wilton Z Transport

rtKids Strategem Community Foundation supports gHea firm in Central Victoria and has provided

l plannin Strategem Financial Group is a well established accounting and financia years. 40 trusted financial advice to a diverse client base for over In February 2009 Strategem’s Board of Directors established the Strategem Community Foundation, with the express purpose of supporting charitable organisations within their community. Strategem Community Foundation’s vision is to build a strong and vibrant community and its primary aim is to support people and organisations that make a difference. HeartKids Victoria recently received a donation from Strategem Community Foundation of $7000 for our Bendigo branch to use to help raise awareness, fundraise and provide family days for our local members. In addition to the financial support, we also appreciate the recognition that HeartKids ‘makes a difference’.

a Prendergast From left: Julie Stratford & Belinda Holden from Strategem, Natash the Strategem of an from HeartKids receiving the cheque from Kevin Martin, Chairm al Group Financi em Strateg of r Directo Community Foundation, and Stuart McKenzie,

22


Yes! I’d like to be involved with HeartKids Victoria... HeartKids Victoria is a registered charity and our services rely heavily on the wider community to be volunteers, sponsors and donors. Tax deductible donations can be made securely on our website www.heartkidsvic.org.au or forwarded directly to HeartKids Victoria. Please send me more information about HeartKids Victoria and in particular about:

p I would like to make a donation of $.........................

(thank you, an official receipt will be sent)

p Cheque

p Money Order - payable to HeartKids Victoria

p Visa

p Mastercard

Credit Card No:

Expiry Date: __ __ : __ __ Signature: ...........................................................

CVC No: __ __ __ Cardholder Name: ..........................................................

Date: ......................... Signed: ........................................................................

__ __ __ __ : __ __ __ __ : __ __ __ __ : __ __ __ __

p I would like to make ongoing donations to HeartKids

p Becoming a Member (Membership is free)

p Becoming a Volunteer

pP  articipating in fundraising & awareness

p Business sponsorship

pM  aking a regular gift through my bank

Street Address: .................................................................................................

p Leaving a gift in my will

Suburb/Town: ................................................ State: .......... P/Code: .............

Please complete this form & post to: HeartKids Victoria PO Box 803, Parkville 3052 Donations of $2 and over are tax deductible

Please automatically debit my credit card: Amount $.................................

p Monthly p Quarterly p Yearly I hereby authorise HeartKids to deduct these funds from the credit card detailed on this form until further notice.

Mr/Mrs/Ms: (First Name) .............................. (Last name)........................................................

Phone: ................................ Email: .................................................................. Heart Child’s Name (if applicable): ........... ............. Relationship to child: .............. Please be assured your details remain strictly confidential. If you do not wish to receive any further information from HeartKids Vic, please tick this box p

Sponsors and Supporters National:

State:

23


 

Diary Dates

od Friday Ap 6 April 2012 - Go

Friday

 

peal

ril Saturday 14 Ap

e

p

- Hoffy’s Challeng

 Sunday 22 April - HeartKids AFL Cu

azz

 Saturday 12 May - Razzamat

ogether  HK 1990’s Get-T Night of Nights  ay - HeartKids’  Friday 25 M t’ Gala Ball ‘Capture a Hear  ne Ju th 15 ay  Frid ds ki r fo ne ur bo el ly - Run M  Saturday 14th Ju

 Saturday 26 May -

  

Sunday 15 July

- Run Melbourne

eck inside or these events ch t ou ab e or m r Fo tkidsvic.org.au go to www.hear

VICTORIA

HeartKids Victoria

 

CONTACT US ARN: A0021470B PO Box 803 ABN: 16 336 986 918 Parkville Victoria 3052 P: (03) 9329 0446 HeartKids is an Auxiliary of The Royal Children’s Hospital, F: (03) 9329 0446 Melbourne, Australia E: heartkids@heartkids.org.au Facebook: HeartKids Victoria (including Tasmania) VISIT US Suite 310 / 55 Flemington Road North Melbourne 3051

www.heartkidsvic.org.au

 

Contact Details

REGIONAL BRANCHES VIC MELBOURNE METRO Albury/Wodonga BRANCHES April Schubert (02) 6056 6448 Bayside 0407 551 967 HeartKids Messagebank l_peter@internode.on.net apri (03) 9513 9030 Bairnsdale lynette.mccoullough@ Caroline Foard 0438 928 821 g.au heartkids.or cfoardy@yahoo.com East Bentleigh Maggie Stavrou (03) 9563 7133 Ballarat Naomi Keath (03) 5332 3679 maggiestavrou@live.com.au 0408 559 535 Bundoora mysissa03@yahoo.com.au Amy Heafield Bendigo 0410 179 135 u rg.a ids.o Natasha Prendergast artk @he amy.heafield (03) 5441 8262 or 0421 590 169 Dandenong goliathgroup@bigpond.com Lucy (Fatima) Hussain Echuca/Moama 0430 738 820 ey Hard Trac la insu Pen Mornington 962 056 0438 Irene Day (03) 5979 4918 ve@bigpond.com nste trac 0413 299 209 Geelong ieday@optusnet.com.au Libby Gibson (03) 5250 2439 Pakenham 0411 057 905 Joanne Arrowsmith libway2000@yahoo.com (03) 5967 7083 Horsham joarrow@bigpond.net.au. Gaynor Baker (03) 5384 2280 k Coo t Poin mtbcarpentry@bigpond.com 7965 Audrey Cater (03) 9394 Latrobe Valley 0420 500 905 om nd.c Sophie Werner 0427 955 453 gpo @bi ater audrey.c sophia.werner@bigpond.com Tullamarine Portland Lynette McCoullough Kerry Sluggett (03) 5523 2503 (03) 9333 1586 gh@ 0418 312 320 lynette.mccoullou ksluggett@iinet.net.au g.au s.or heartkid Goulburn Valley Wantirna Cheryl Alexander d Ree Amanda (03) 5825 4005 miranda_thanks@yahoo.com 024 976 chezalex70@bigpond.com Janita Felici 0422 m il.co gma ici@ South Gippsland janitafel Kerrie Disney (03) 5182 5531 0409 950 608 urme2@tpg.com.au

Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 leanneamarant@hotmail.com Wangaratta Karyn Howard 0412 988 285 karynh74@gmail.com Wonthaggi Cath Methven 0429 325 643 catmet73@gmail.com TASMANIA Burnie Amanda Riley 0448 330 611 amanda.riley1@bigpond.com Gail McFarlane (03) 6433 1274 0488 033 789 themcfarlane4@bigpond.com Hobart Paul Hyland (03) 6247 8435 0418 561 504 paul.hyland1@bigpond.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 kylie.smith@heartkids.org.au INTERSTATE Contact details at: www.heartkids.org.au

22q11 Audrey Cater (03) 9394 7965 0420 500 905 audrey.cater@bigpond.com EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com OVER 18’s Erin Cervelli (03) 9513 9030 KAWASAKI DISEASE Shirley Mates (03) 9894 1257 akfn@optusnet.com.au u Website: www.kdfoundation.org.a ME KABUKI SYNDRO Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 csaba.ovari@hearts-of-hope.org LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 u sherrie.mcdonald@heartkids.org.a or g.au s.or www.sad www.sads.org.uk/ CARDIOMYOPATHY ASSN of

SPECIAL INTEREST GROUPS BEREAVED FAMILIES EMAIL SUPPORT http://www.hearts-of-hope.org/ support/bereavment/intro.htm HEART TRANSPLANTS Belinda Holden 0400 714 182 PACEMAKERS Mandy Tichelaar (03) 9728-6984

AUST. Website: www.cmaa.org.au/ MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 MULTIPLE BIRTHS April Schubert (02) 6056 6448 0407 551 967 april_peter@internode.on.net

2012 Autumn HeartKids Victoria-Tasmania Magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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