Information

Research articles

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.

School_Information_Sheet.pdf

TeachersandCarers.pdf

First_Aid_Action_Plan.pdf

MedHistoryForm.pdf

Research Articles
SchoolAndBehaviourProblems.pdf

FontanOperationReview.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

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

Member_Form.pdf

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

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

Patient Associations

National Organisations

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.

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
Front
Back

Order Form

Please complete an order form and send your order to us. New_Merchandise_Order_Form.pdf

Entertainment Books

Entertainment Books contain hundreds of 25-50% off and two-for-one offers from popular restaurants, cinemas, hotel accommodation, the arts, and sporting events. There truly is something for everyone, with high value offers from Avis, Warner Bros. Movie World, Crown Towers, Hamilton Island, Jacques Reymond, Zoos Victoria and many more. Entertainment_Book_2008_Order_Form.doc

HeartKids Coffee Mugs

The mugs are not suitable for posting – you can arrange to pick one up when you next visit the RCH or purchase one at a HeartKids function.

“Stuck On You” Labelling Solutions

Stuck on You has a fantastic range of products to organise your household – Labels, Tools 4 School, Shoe Labels, Luggage Tags, Personalised Journals, Star Charts etc. Now featuring The Wiggles. You can order on-line www.stuckonyou.biz – please remember to list HeartKids Victoria as the fundraising organisation, or call us and we can send you a brochure.

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 us directly.

Email:
Phone: 03 9513 9030
Fax: 03 9345 6001

How to Make a Donation

You can help HeartKids make a difference in the lives of children with heart disease by generously donating. This will continue our vital services of supporting these children and their families as well as raising funds for research and items of need in the Cardiology areas of Children’s Hospitals in Victoria.

You can make a donation via our secure website or by post.
Online Donation – click on the logo

Postal Donation – Please complete this coupon, enclose with your donation and mail to: HeartKids Victoria, C/o Cardiology Department, The Royal Children’s Hospital, Parkville, Victoria 3052 or fax 93456001.

Heartkids_Victoria_Donation_Form.pdf

Bequest

What is a bequest?
A bequest is a gift that can be either named or anonymous. It is contained within a Will and specifically reserves part of an estate for a particular beneficiary.

A bequest may be:

a sum of money from your estate
a fixed percentage of your estate
the residue of your estate
shares, bonds, life insurance policies, artworks
other personal property

Whilst we are mindful of the personal and sensitive nature of a Will, HeartKids appreciates knowledge of your intention to provide for HeartKids in the form of a Bequest so that we can thank you in your lifetime. All correspondence and information will be held in the strictest confidence.

HeartKids and bequests
HeartKids relies on the generosity of the community in order to run our activities for our Heartkids and their families. Leaving a bequest to HeartKids will ensure that these services continue to support our children and their families living with congenital heart disease.

A Bequest to HeartKids
For more information please contact Scott Reinke, President of HeartKids Victoria, on (03) 9417 0707 or by email at

Membership

General Membership

Associate Membership

Corporate Membership

Facts about Childhood Heart Disease

Incidence of Childhood Heart Disease is far greater than most people expect. Although it comes as quite a shock to family and friends alike, an astounding 6 babies each day in Australia are diagnosed with heart disease! Cures remain predominantly unknown and little in general is known about the disease and its causes. Therefore we need your help to assist in addressing this situation

Common known facts about CHD include;

Heart defects are present in 1 in 100 babies
Heart defects are the most common birth abnormality
Heart disease in children is the leading cause of young children death in Australia, accounting for more than 30% of all childhood deaths.
Childhood Heart Disease takes more lives than all other childhood diseases combined
Nearly twice as many children die each year from congenital heart disease compared with all childhood cancers
More than 2015 babies are born in Australia each year with a heart defect
Childhood heart disease is no fault of the parents or the child. It is simply a result of the cruel hand of fate
The severity of defects in heart children can range from a hole in the heart, to a highly complex combination of conditions
Up to 20% of heart defects are gene-linked abnormalities, but for the remaining 80% the cause is largely unknown
More than half of these conditions are serious enough to require treatment through medication or surgery – sadly some cannot be repaired
Cures of these heart conditions remains unidentified, therefore there is an immense need to develop early intervention strategies to identify and prevent heart disease in children
Heart disease is the most common reason for admission of Australian children to intensive care units with more than 1300 being admitted each year
The term ‘congenital heart defect’ refers to an abnormality of the heart, which is present at birth. It has nothing to do with diet or obesity
Heart valve replacements come in 3 forms: homographs (valves from humans) tissue valves (from cows or pigs) and mechanical man-made valves
Some children acquire heart conditions during childhood, eg cardiomyopathy, Kawasaki disease or as a result of rheumatic fever
A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is rampant in many communities
Heart Transplants are much more challenging for children as their immune systems are not fully developed
The only Paediatric transplant unit in Australia is at the Royal Children’s Hospital, Melbourne

More than 4 young Australians will die this week as a result of congenital heart disease. Will you help to save them?

Sources:
Australian Institute of Health and Welfare
Australian Bureau of Statistics
American Heart Association

Our partners

coming soon

Annual Reports

HeartKids Board Victoria

Board members are elected at the Annual General Meeting. Most of the Victoria board members are parents of HeartKids who are concerned with the high incidence of congenital heart defects. All board members are volunteers who donate their time and experience to support HeartKids Victoria in its goals.

HeartKids Victoria Board

Chairman: Scott Reinke
Vice-Chairman: Clare Fountain
Secretary: D’Arne Finnis
Treasurer: Michael Johnson
Human Resources: Casey George
Legal: Tim Frampton
Volunteers: Di Gillies
Advocacy: Karen Barfoot
General Member: Sarah Spenceley

HeartKids Victorian Patrons:

Professor Jim L Wilkinson MB.ChB.,FRCP,FRACP,FACC,FRCPCH
Senior Cardiologist, The Royal Children’s Hospital
Honorary Cardiologist, Royal Melbourne Hospital
Honorary Cardiologist, Monash Medical Centre
Honorary Cardiologist, Geelong Hospital

Ted Kitto, Kiwanis Australia

Our history

Our Vision and Mission

Our Vision

Embracing the future for HeartKids.

Our Mission

Australia will have a reduced incidence of children with heart disease, a reduced mortality rate in children affected by heart disease and significant support will be provided to HeartKids and their families.

This will be achieved through the development of: Research, Support, Awareness and Advocacy.

Who we are

HeartKids is a support group for families of children with heart disease, be it congenital (born with) or acquired. We started as voluntary group of parents and individuals dealing with and concerned about the day to day realities of raising and caring for children with cardiac conditions, and sometimes dealing with the loss of a child due to their congenital heart defect. We have grown to an organisation of some strength with a presence in almost every state of Australia, as well as a National body – HeartKids Australia.

Our members wish to offer their support to other families who are in crisis, providing opportunities to share common anxieties and challenges. We arrange, where possible, to meet with other families affected by the impact of life with a child with a cardiac condition and to create a ‘network of support’ for all families.

Over the years, HeartKids Victoria including Tasmania, with the help of members, sponsors and friends, has been able to help out the children’s hospitals by way of donations of money, equipment and research grants.

HeartKids has several regional representatives who offer their time to arrange coffee mornings and special activities in order to support families with a child with congenital heart disease. Telephone support is also offered. Our aim in this area is to ensure that parents aren’t struggling alone.

HeartKids produce seasonal newsletters which update and inform our members on patient progress, special ‘heart family’ activities, government policy, information of relevance, upcoming events and much much more. HeartKids news keeps our geographically diverse membership aware and ‘close’.

HeartKids can assist with information about your hospital stay, for example information on available accommodation, meals, transport and parking. We can also assist with information on the availability of certain hospital services such as social workers, occupational therapists, and speech pathologists.

Most valuable to our families during the crucial time of surgery are our Family Support Co-ordinator in Victoria and our Branch Co-ordinators in Tasmania. These co-ordinators are ‘heart mums’ and understand more than most what families are experiencing during the often tension filled hospital stays.

As well as offering support to families, HeartKids aims to increase awareness in the general community and corporate sector about the high incidence of congenital heart defects and its ongoing consequences.

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