Research articles
SchoolAndBehaviourProblems.pdf
Heart Angels
This Page is devoted to those children who have passed away as a result of Heart Disease.
Would you like to see your Heart Angel’s story on this page? If so, just write your story up, include some pictures and email it all to the HeartKids email at or contact us on (03) 9513 9030.
Photo courtesy of Tuesday’s Child Photography and the Gleboff-Barker Family
Jaime Ekberg 19/12/05 – 3/10/07
Jaime Ekberg, born 19 December 2005
Delivered at Monash where she was to arrive
A lively cry in the mid afternoon
Brought tears of joy in the delivery room
She had a condition called Hypoplastic Left Heart
Which would change our lives from the very start
We learnt of procedures that would help her survive
And operations on her heart to keep her alive
The months to follow had many hospital stays
They were filled with anxiety for nights and days
At four and a half months we finally came home
After sharing a room, we were now all alone
As Jaime got older we were travelling a lot
Be it hospital, home, it just never stopped
We cried and laughed, we believed in hope
Jaime was strong, which helped us cope
It wasn’t that long we were back on the ward
We were stressing and worried and sometimes bored
Jaime’s condition was a test to us all
To get very sick, then bounce back like a ball
Her character and strength and her cheeky smile
Were enough to inspire us all for a while
But the performance in her was always alive
She loved to blow kisses, say ‘TaTa’ and hide
Eating and walking weren’t really her thing
She much preferred music, to dance and sing
She played musical toys and sang about bees
Clapped hands, stamped her feet and tapped her knees
Her brother and sisters came to love her too
They will miss her games of peek-a-boo
There were bubbles blown around her cot
She would point at them, pop pop pop
To us you will always be our star
Mumma and I now wish you ‘TaTa’
Poem by Jaime’s Dad Cameron Ekberg
Fundraising
School Information
The forms below may assist you when your child starts childcare/preschool/school.
Research Articles
SchoolAndBehaviourProblems.pdf
PaediatricCardiologyAtMonashHeart.pdf
Stories intro
Would you like to see your HeartKid’s story on this page? If so, just write your story up, include some pictures and email it all to the HeartKids email at or contact us at The Royal Children’s Hospital on (03) 9513 9030.
How to become a Sponsor
As a Charity with both State and National offices we welcome sponsors at both levels. For details on how to become a sponsor at a state level please contact your state office directly. For companies wishing to take on a sponsorship at a national level we offer a number of packages;
Principal Sponsor
This contributes to research or to the core costs of the Charity over a fixed period to advertise your community spirit and commitment to the welfare of our children. There are a range of coporate benefits depending on the level of support offered. Please contact HeartKids Victoria for details on 0419 576 448.
Employee Sponsor
This unique opportunity allows you to employ a HeartKids employee for 6 months at either a state or a national level. As a new national charity this allows us to channel vital resources where they are most needed during our critical start up phase.
Campaign and Event Sponsorship
Through out the year HeartKids holds various campaigns including Stick on a Smile, Gala Balls and other fundraising events. These can be sponsored on either a state or national level.
Equipment or Research Sponsor
With HeartKids making up the majority of admissions into Intensive Care Units around the country, there is always a need for new equipment. At HearKids we can direct your sponsorship dollars directly to the area you would like to contribute. This can range from beds to tv’s to cardiac monitoring equipment. OR if you prefer we can channel your donations specifically into research.
Create your own event at work or your mother’s group.
There are a number of ways you can raise funds independantly for HeartKids, each state offers their own unique angle on what’s fun to do, or you can simply make up your own.
We want to take this opportunity to thank the following organisations for their support of HeartKids
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Corporate Membership
HeartKids Corporate Membership is State based and is open to all businesses, associations and organisations.
In today’s competitive world, it’s important to get the balance right. Lending your organisation’s support to a worthy cause like HeartKids not only builds your reputation as a ‘good corporate citizen’, it makes your staff and clients feel positive about you, so they’re more likely to want to work for, and with, you.
Aligning your company with HeartKids gives your company the chance to promote your commitment to social responsibility and share the opportunity to express that commitment with your staff.
By taking up the opportunity to make a difference, your staff will not only gain great satisfaction, they’ll have the chance to build better relationships with their colleagues, utilise their skills in a new and positive way, and perhaps demonstrate some new skills that will build their own reputation and regard within the workplace.
Corporate Membership offers you:
- Corporate Certificate Membership Registration ready for framing
- Guide to Workplace Giving Program
- Priority registration at corporate fundraising events
- Employee Information Kits
- HeartKids Merchandise Box with donation tin for $200
Corporate Membership fees:
Bronze: Businesses with 0-20 employees $400 per annum
Silver: Businesses with 21-99 employees $600 per annum
Gold: Businesses with over 100 employees $800 per annum
Click below to download the Corporate Membership Registration Form
HeartKids_Victoria_Corporate_Membership_Registration.doc
Membership is subject to approval in accordance with the rules of HeartKids Victoria.
If you would further information please contact HeartKids on 03 9513 9030 or email:
Click below to download the Corporate Membership Registration Form for VECCI members only
HeartKids_Victoria_Corporate_Membership_Registration_for_VECCI_Members.doc
Associate Membership
HeartKids Associate Membership is State based and is open to all interested persons.
- Any interested person
Associate Membership Annual Fee $20.00
Associate Membership offers you:
- A seasonal Newsletter to keep you informed and updated
- Opportunities to participate in your areas of interest
Membership is subject to approval in accordance with the rules of HeartKids Victoria
Click below to download the Associate Membership Form
HeartKids_Victoria_Associate_Membership_Form.pdf
General Membership
HeartKids membership is State based and is open to individuals and families as follows:
- Persons with congenital or childhood heart disease
- Parents or guardians of a child with pediatric heart disease
General Membership Annual Fee $20.00
General Membership offers you:
- A seasonal Newsletter to keep you informed and updated
- Family Support Coordinators – presented in hospital to offer you support at critical times and by phone and email as required
- Regular coffee mornings so that you can meet and share experiences with other families, these can be held either in hospital or in your local area,
encouraging a local network of support for you and your family - Opportunities for your heart child to attend events with other heart children
- Opportunities to attend special afternoon or evening information events by invited medical practitioners and other professionals as they arise.
Membership is subject to approval in accordance with the rules of HeartKids Victoria
Click below to download the General Membership Form
Volunteers
HeartKids Victoria offers a wealth of opportunities to become involved as a volunteer – fundraising activities, supporting one of our functions, providing secretarial and office work to help our small team, or even supervising kids at Teens Camp… whether you spend hours a week, or an hour a year or as a ‘one off’, all of it is appreciated.
HeartKids Victoria provides support, advocacy, equipment and research for kids with heart disease and their families, but it is volunteers like you who make it possible.
Together, we can make a real difference. Call HeartKids Victoria on 03 9513 9030 and learn more about how you can help and don’t forget to tell others about us and help spread the awareness that will ensure better outcomes for all HeartKids. HKV_Volunteer_Registration_Form.pdf
home page sponsor logos
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home page text
Welcome members, visitors and supporters of HeartKids.
The aim of this site is to provide useful information and avenues of support for families of heart children.
Please browse the site for information on:
- Our support services
- A list of our partners and supporters
- Upcoming events and regional news
- Our contact details and membership details and,
- Your stories – generously shared by the families affected by CHD.
Thank you for getting in contact with us
Enquiry Pack
Disclaimer
Please remember that the opinions expressed in any article herein represent personal experience only. MEDICAL DETAILS ARE SPECIFIC TO EACH INDIVIDUAL CASE AND MAY NOT BE APPLICABLE TO ANOTHER CHILD. Parents who require more specific information should check with their child’s own Cardiologist.
Also, please note, that the opinions expressed in the articles herein, are those of the author and do not necessarily represent the beliefs or opinions of the committee of Heartkids Nsw Inc.
Further Disclaimer:
Graphics found on this site were not created by the webmaster. They were obtained from various sources on the internet that labeled them as “freely distributable”. If you should discover images in this collection which you recognize as copyrighted, please email the immediately so that they may be removed.
Useful and Interesting Links
- Australian Genetics Support Australasia
- Better Health Channel
- Cardiomyopathy Association of Australia
- Congenital Heart Disease Resource Page
- Down Syndrome
- Genetics Education Program of NSW
- Heart Support – Australia
- Hospital for Sick Children in Toronto
- Hypoplastic Left Heart Syndrome
- Kawasaki Disease
- Long QT Syndrome
- Marfan Syndrome
- Marfan NSW
- Pediheart General Info on C.H.D.
- Velo-Cardio-Facial/Di George Syndrome
- Williams Syndrome
Patient Associations
National Organisations
- Anticoagulation Europe
- Association for Children with Heart Disorders
- Association for Children with Heart Disorders, Scotland
- Cardiomyopathy Association
- Childrens Heart Federation
- Heart Line
- Little Hearts Matter
- Marfan Association UK
- Pulmonary Hypertension Association
- ANCC, Association Nationale des cardiaques congénitaux [France]
- Foreningen for Hjertesyke Barn [Norway]
- Jemah [Germany]
- Nederlandse Hartstichting [Netherlands]
- Adult Congenital Heart Association [US]
- Adults with Congenital Heart Conditions [New Zealand]
- Canadian Adult Congenital Heart Disease Network [Canada]
- CHARGE Syndrome Foundation, Inc. [US]
- Childrens Heart Society [Canada/North America]
- Heart Children New Zealand Inc. [New Zealand]
- Noonan Syndrome Support Group [US]
Sad Links
Sadly, sometimes heart children die.
Sometimes families and friend no matter how much they might wish to, can’t be the one you need to turn to. You may not have lost your child but maybe a friend has and you want to help but can’t quite find the place to start. The following are links to sites in both Australia and overseas that have been started to help families, both parents and siblings who have lost a child.
We wish that we did not have to add these links but are very grateful that we are able.

Sids and Kids NSW is an organisation that offers grief/bereavement counselling to families who have experienced the sudden and unexpected death of a child up to six years of age; there are groups also in the Hunter and other states of Australia. This site was suggested by a member who has used it and found them to be helpful.
M.I.S.S. Foundation in the USA was started by Joanne Cacciatore after the death of her daughter. There are lost of different areas on this site and it is the place of the well known kindness project. While checking this site over I found it a little sad, informative, complex and surprising to me, very uplifting. I have ‘spoken’ with Joanne via email and found her to be a very lovely woman who was pleased to be asked to be a link on our site.
The Compassionate Friends was founded in Coventry, England, in 1969, by Rev. Simon Stephens, Assistant to the Chaplain in the Coventry and Warwickshire Hospital. Simon noticed that the intensity and duration of parental grief was much greater than that of others who lost loved ones. He brought together two couples whose children had died at the same time, hoping they might comfort one another. It worked; each parent understood the pain the others were going through, and they were able to support and help one another as no one else could do. In time, the two couples reached out to other grieving parents, and The Compassionate Friends was founded. Compassionate Friends has Australian Offices.
Further telephone contacts are:
- Kids Help Line: 1800 55 1800
- Lifeline: 131 114
Our Contact Details
HeartKids Victoria including Tasmania
C/o Cardiology Department
The Royal Children’s Hospital
Flemington Road
PARKVILLE VIC 3052
Email:
Web: www.heartkidsvic.org.au
Phone: 03 9513 9030
Fax: 03 9345 6001
This is a message bank service, please leave a message and we will return your call promptly.
For the Support Manager contact Tracy Stanley 0417 569 733
Email:
Tasmania Contact Details
Melissa Bannister
Hobart Branch Co-ordinator
Email:
Phone: 03 62741481
Mobile: 0405 050 718
Kylie Smith
Launceston Branch Co-ordinator
Email:
Phone: 03 6393 6240
HeartKids Australia
HeartKids Australia Inc.
PO Box 204
WAHROONGA NSW 2076
Email:
For any Vending Machine enquiries contact Lisa White on:
Email:
Please call during work hours or leave a message on our phone line and you will be contacted within 24 hours. Office: 02 9487 8256
Web: heartkids.org.au
HeartKids State Organisations in Australia
Queensland
HeartKids QLD Inc.
Phone: 07 3341 8145
Fax: 07 3341 5460
Post: P.O. Box 118 UNDERWOOD QLD 4119
Email:
Web: heartkidsqld.org.au
New South Wales
HeartKids N.S.W. Inc.
Phone: 02 9294 0800
Fax: 02 4423 5812
Post: PO Box 41 NOWRA NSW 2541
Email:
Web: heartkidsnsw.org.au
Western Australia
HeartKids W.A. Inc.
Phone: 08 9340 7996
Fax: 08 9340 7997
Post: P.O. Box 1554 WEST PERTH W.A. 6872
Email:
Web: heartkidswa.org.au
South Australia
HeartKids S.A. Inc.
Ph: 0406 165 111
Post: PO Box 364 North Adelaide SA 5006
Email:
Web: heartkidssa.org.au
Northern Territory
Heart Kids N.T.
P.O. Box 848
Palmerston N.T. 0830
Merchandise
HeartKids is currently running a number of fundraisers to help us continue our support programs and raise awareness about congenital heart defects. To order please complete the order form below or call 03 9513 9030. Please pass on to your friends, family, work colleagues or anyone who may be interested.
Corporate Christmas Cards
Corporate Christmas cards are now on sale. To order simply go to: www.christmascards4charity
Christmas_Card_Brochure_2008.pdf
Mini Hot Water Bottle with knitted cover $12.50
Miniature hot water bottle with red knitted cover featuring white heart. Measures 24cm high x 15cm wide
Herbie the Ouch $10.95
Help soothe your littlie when bumps and falls happen. Herbie the Ouch Pack will magically take the tears away. Available in Blue & Pink. Contains gel chill pack. Herbie the Ouch Pack is 18cm tall.
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Herbie the Love Hug $24.95
Herbie the Love Hug Heat Pillow in super soft micro-velour with a red heart embroidered on for that special touch! Herbie is filled with organically treated wheat and soothing aromatic herbs. Herbie’s healing herbs and wheat gives moist heat to your body, soothes your muscles, relieves joint and neck stiffness, back and stomach cramps, arthritis, sinus, stress and relaxes your mind. Herbie can also assist swollen feet, bruising, fever, sprains and headaches – by placing in the freezer. Herbie the Love Hug is 33cm tall.
Tippy Toes Sweetheart Socks $19.90/box
Six colours size 0-12 months.
Cosmetic Bag $11.50
PVC black with pink hearts measures 18cm x 10cm
Smoochy Microbead Comfort Pillow $16.95
Red Heart-shape Microbead Comfort Pillow – 33cm wide. Smoochy is the ultimate huggable, comfort pillow. Take Smoochy to bed when you need something to cuddle, use smoochy in the bath as a comfortable neck pillow, or take smoochy travelling … the heart shaped curve fits perfectly to support the neck and head. NOT SUITABLE FOR CHILDREN UNDER 5
HeartKids T-Shirts & Polo Shirts
Children’s & Adult sizes available
Children’s T-Shirt $15, Adult T-Shirt $20, Children’s Polo Shirt $20, Adult Polo Shirt $25
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