Teen Camp


The HeartKids annual teen camp provides teenagers who are experiencing the incredible trials of living with heart disease, the opportunity to meet with others and to receive support from the HeartKids organisation and its large team of volunteers and specialists. HeartKids offers teenagers in every state the opportunity to attend the camp for 3 days of fun-filled activities. Here they can develop new friendships, realise they are not alone and receive counselling to assist them to deal with issues they face. For many of these teens, their future is very much unknown. It gives them the much needed break from treatment and offers their families the support that is needed.

Bookings now open for 2009 camp. Camp is free – including airfares!!!
Dates: 23rd Jan – 26th Jan 2009
Ages: 13 – 20 years old
Location: Campaspe Downs Country Resort, Kyneton, Victoria.

Click link to register

Camp Registration Form 2009

Come and be part of the camp fun!

Activities include:
Canoeing, archery, flying fox,
low ropes, horse riding, swimming,
bush golf, yabbying, climbing wall.

HeartKids greatly appreciates the support of Newman’s Own Foundation and Roche Diagnostics

Recommended Readings

Information

The forms below may assist you when your child starts childcare/preschool/school.
First_Aid_Action_Plan.pdf
MedHistoryForm.pdf
School_Information_Sheet.pdf
TeachersandCarers.pdf

home page logos

“image“:http://www.manchesterunity.com.au/
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Stories

HeartKid of the Month

Makayla Tyrrell

Makayla’s mother discovered something was amiss with her pregnancy during her 20 week ultra sound which showed her child had a major heart defect. Whilst she was given options to terminate the pregnancy she chose to keep her baby. On 9 December 2007 the world welcomed Makayla.

Within 2 hours she was transferred to the Royal Children’s Hospital in Melbourne where it was confirmed she had a multitude of heart defects which included; Transposition of the Great Arteries, Double Inlet Left Ventricle, Ventricular Septal Defect and Hyperplastic Right Heart Syndrome.

The ensuing months have been somewhat challenging for Makayla and her family, with a series of operations and constant trips to the hospital. Whilst she has just recently undergone her fourth operation and has another planned at around 5 years of age, things are looking positive for this beautiful girl.

Her mother Lauren reports she has been most appreciative of the support offered to her and her family by HeartKids. “These have been most challenging times, but we take each day as it comes. Everyone has to keep smiling as Makayla never stops smiling. We are lucky that we have a happy baby.” says Lauren.

Please support Makayla and the many thousands of other children like her.

Faces of HeartKids

There are tens of thousands of HeartKids living in Australia. The faces you see here represent but a handful. Each of them is unique and has their own special story to tell. Discover their stories and how HeartKids continues to help these families by visiting your HeartKids State Organisation website.

If you would like your story featured please contact your HeartKids State Association.
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Tiffin-Rose Weder – “I am dying but I want to help HeartKids”

Tiff Weder is a brave 18 year old from Perth who suffers from a serious heart condition that threatens to take her life. Rather than dwell on this, Tiff wants to use her time to assist HeartKids by raising awareness of Children’s Heart Disease and hopefully attract funding to ensure less children are born with heart disease and that mortality rates improve….more.

Tiffin was born with an asd and Congenital heart block. It was fixed at the age of 4 with a pacemaker. Tiffin then enjoyed a normal life. She played sports, did swimming all lived like other children. However when she was 13 she complained
of a stomach ache and after many tests doctors discovered she had contracted cardiomyopathy which had severely compromised her heart.

She has known for a long while that she would need a transplant, but with a rare blood type and with so many risks attached to heart transplant she lives in limbo and is continually in and out of hospital.This is really draining for her and making her feel really ill.

However rather than become introverted and disillusioned, Tiff recently contacted the CEO of HeartKids to see if she could do something with her remaining life to assist others like her and to hopefully raise funds for research to ensure less children are born or acquire heart disease and that mortality rates improve.

If you want to help Tiff achieve her goal please visit the donation section in the website.
Channel Seven’s Simon Reeve has been one of the first to offer his support – dedicating his recent African Adventure to Tiff’s tenacity and strength to overcome adversity.

RECENT UPDATE

Readers will be delighted to learn that, with her health rapidly detriorating and after a series of minor heart attacks, Tiff received a call that an almost perfectly matched heart was available for transplant. Was this karma for someone wanting to help others? After a full day’s surgery and 10 days in hospital, Tiff has a whole new life in front of her. Tiff reports all is progressing extremely well with her body accepting the new organ as well as could be expected. She says it is like having a V8 in her chest. She has so much more energy and for the first time in her life she is able to contemplate a normal life. Tiff is even now looking for a job and would welcome a call from anyone looking for an intelligent vibrant girl with a really positive outlook on life. Please call HeartKids Australia if interested in meeting Tiff.


Tiff just four days after her heart transplant.

Welcome members, visitors and supporters of HeartKids.

The aim of this site is to provide useful information regarding our organisation and its mission, along with providing an avenue of support for HeartKids and their families.

At HeartKids we strive to offer support, encouragement and hope to families of children with Heart Disease, while raising awareness and vital funding into the causes of this chronic disease. While for many families of these children the future is clouded with uncertainty, our goal is to secure the futures of our very special kids. We are also seeking to gain greater public awareness and support for our cause so that we can make a real difference. We have recently partnered with leading cardiologists and researchers with the aim of providing them with financial support to assist them with research and management of children with heart disease.

Latest News

HeartKid of the Month

Surgery Cancellations at RCH

Please support HeartKids this Christmas. HeartKids Christmas Cards

Thank you for getting in contact with us

For support services please call your local state group.

HeartKids Australia

HeartKids Australia Inc.
PO Box 204
WAHROONGA NSW 2076
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

HeartKids Groups In Australia

HeartKids Australia

CEO, Neil McWhannell JP
Office: 02 9487 8256
Fax: 02 9489 5693
Mobile: 0424 161 923
Post: PO Box 204 Wahroonga NSW 2076
Email:
Web: http://www.heartkids.org.au

Queensland

HeartKids Queensland Inc
Phone: 07 3341 8145
Fax: 07 3341 5460
Post: P.O. Box 118 UNDERWOOD QLD 4119
Email:
Web:http://www.heartkidsqld.org

New South Wales HearthKids NSW Inc Phone: 02 9294 0800 Fax: 02 44235812 Post: PO Box 41 NOWRA NSW 2541 Email: Web:http://www.heartkidsnsw.org.au

Western Australia

HeartKids W.A. Inc.
Phone: 9340 7996
Fax: 9340 7997
Post: P.O. Box 1554 WEST PERTH W.A. 6872
Email:
Web:http://www.heartkidswa.org.au

Victoria & inc. Tas

HeartKids Vic Inc (including Tas)
Phone: 03 9513 9030
Fax:
Post: C/o Cardiology Department
The Royal Children’s Hospital
Flemington Rd
PARKVILLE VIC 3052
Email:
Web:http://www.heartkidsvic.org.au

South Australia

HeartKids South Australia Inc
Ph/Fax: 08 8263 3626
Mobile: 0407 070 656
Post: PO Box 364 North Adelaide SA 5006
Email:
Web:http://www.heartkidssa.org.au

Northern Territory

Heart Kids N.T.
P.O. Box 848
Palmerston N.T. 0830

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

Organ Donation Sites

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. For NSW: 4th Floor 32 York Street, Sydney (02) 9290 2355

Further telephone contacts are:

  • Kids Help Line: 1800 55 1800
  • Lifeline: 131 114
  • Bereavement C.A.R.E. Centre: (02) 9869 3330

Our Contact Details

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
Fax: 02 9943 0687

HeartKids State Organisations in Australia

Queensland

HeartKids Queensland 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 NSW. Inc.
Phone: 02 9294 0800
Fax: 02 9834 6841
Post: C/-Adolph Basser Cardiac Institute
Children’s Hospital Westmead
Locked Bag 4001
Westmead NSW 2145

Email:
Web: heartkidsnsw.org.au

Western Australia

HeartKids W.A. Inc.
Phone: 9340 7996
Fax: 9340 7997
Post: P.O. Box 1554 WEST PERTH W.A. 6872
Email:
Web: heartkidswa.org.au

Victoria including Tasmania

HeartKids Victoria Inc (including Tas)
Phone: 03 9513 9030
Fax: 03 9345 6765
Post: C/o Cardiology Department
The Royal Children’s Hospital
Flemington Rd
PARKVILLE VIC 3052
Email:
Web: heartkidsvic.org.au

South Australia

HeartKids South Australia 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 State Organisations offer a range of merchandise for sale to members and to the general public.

Corporate Christmas cards

Corporate Christmas cards are now on sale. 40 cents from each card goes to HeartKids.
To order simply go to: www.christmascards4charity.com.au/heartkids

All proceeds are used to support the group’s activities and in turn the HeartKids themselves and their parents and families.

Pins, Pens and Stickers

Clothing

Book

Calendars

To view merchandise, please view your HeartKids State Organisation’s website

Our Supporters

We want to take this opportunity to thank the following organisations for their support of HeartKids

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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 Australia for details. Ph 02 9487 8256

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.

How to Make a Donation/Bequest or to Volunteer

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 around Australia. You can donate by cash, cheque or credit card. Cash and Cheques should be posted to HeartKids Australia PO Box 204 Wahroonga NSW 2076. If you are interested in leaving a bequest to HeartKids or establishing a Memorial Fund you are invited to contact Neil McWhannell HeartKids Australia CEO on 02 9487 8256 or download and complete the attached forms.

To make a cash or credit card donation online please click below: Note this takes you to a secure website
Donations made through this site go to HeartKids Australia to fund national initiatives. To donate to a State, do so through their website.



Postal Donation – DONATION_SLIP.pdf

You may also wish to donate to the HeartKids/Manchester Unity Trust Account. Simply click on the Manchester Unity logo to take you to our secure site. Donations made to this account will go directly to fund the research program that is being supported by Manchester Unity. Receipts will be sent out for all donations.

Max’s Place

HeartKids parents visiting Melbourne often use a special accommodation facility generously provided by Heather and Tim Round from Adelaide. If you would like to support them with the running costs of this facility you are invited to donate through the online button shown below.

Volunteering

HeartKids offers a wealth of opportunities for volunteers to become involved. From supervising Teen Camp, fundraising, supporting one of our functions to secretarial and office work to help our small team out, all of it is appreciated – whether your involvement is heavy or light, long term or short, we encourage volunteers to contact their State Group or HeartKids Australia on 02 9487 8256 and learn more about us. At the very least, your interest will we hope generate awareness which is sorely needed.

Bequests

Naming the HeartKids Australia in your Will is a simple act of generosity and a lasting legacy to ensure future generations of children are healthy.
Bequests 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 around Australia.

Bequest_Form.pdf

Gifts in Memory

A Memorial Donation to HeartKids Australia is a lasting tribute to the memory of a loved child who has passed away. It is also a meaningful alternative to flowers and gives families and friends the opportunity to support HeartKids in its work to ensure less children are born with heart disease and that mortality rates are improved.

Gifts in Memory Form Gifts_in_Memory.pdf<a href=“http://www.heartkids.org.au/images/uploads/state/forms/

Membership

HeartKids membership is State based and is open to:

  • Families with a child who has a congenital heart defect or acquired childhood heart disease. This includes parents, siblings, grandparents etc.
  • Teenagers and Adults with CHD who would like to join a forum for discussion.
  • To any individual or group concerned with the issues of congenital heart defects who have a specific interest in helping raising awareness and funding.
  • To any individual involved in the issues of congenital heart defects and acquired childhood heart disease, be they from a medical background or the political arena.

Membership

Membership offers you:

  • A seasonal Newsletter to keep you informed and updated;
  • Family Support Coordinators – present 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.

Contact your HeartKids State Organisation if you are interested in taking up membership

Volunteering

HeartKids offers a wealth of opportunities for volunteers to become involved. From supervising Teen Camp, fundraising, supporting one of our functions to secretarial and office work to help our small team out, all of it is appreciated – whether your involvement is heavy or light, long term or short, we encourage volunteers to contact their State Group or HeartKids Australia on 02 9487 8256 and learn more about us. At the very least, your interest will we hope generate awareness which is sorely needed.

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

h1.We want to take this opportunity to thank the following organisations for their significant support of HeartKids

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HeartKids is also developing partnerships with leading paediatric cardiologists, children’s hospitals, researchers and other international organisations focussed on childhood heart disease.

Annual Reports

2007/2008 Annual Report

Annual_Report_2008_PDF.PDF

2006/2007 Annual Report

Annual_Report_HKA_web.pdf

HeartKids Australia Board - 2008

HeartKids Australia Inc is governed by a board made up of State representatives along with various skill based appointments.

The current Board comprises of:

  • Chairman: Stephen Shepherd
  • Vice-Chairman and Public Officer: Clare Fountain
  • Treasurer: Ryan Payne
  • Directors: Lee Morgan, Matt Tognini, Matt Turner, Jean-Jacques Lasm, Matt Finnis, Scott Reinke
  • Board Secretary and Chief Executive Officer: Neil McWhannell JP

Our History

Over 25 years ago, ‘HeartKids’ was born of the passion of a few families who had experienced the kaleidoscope of emotions associated with having a child with congenital heart disease.

In the ensuing years HeartKids offices were established in the various states in Australia, with management and a team of Family Support Coordinators able to support families, all backed by a board and a group of committed volunteers.

In 2004 sixteen delegates at the annual conference unanimously supported the proposal that an alliance of state associations be created to form an Australian HeartKids group, and that its name be ‘HeartKids Australia’ (HKA).

An Interim Board was established to support and guide the working party, and oversee Heartkids Australia’s progress.

The journey into 2006 saw HeartKids Australia adopt a constitution, become incorporated, develop its corporate identity, raise funds for research and form alliances with a range of related organisations, sponsors and supporters.

Recent Developments

In June 2007 the appointment of the new full-time Chief Executive Officer was confirmed and the National Office of HeartKids Australia began operating.

In August 2007 a part-time Chief Financial Officer was appointed. This person is contracted to fulfil both HeartKids Australia and HeartKids State Organisations work.

At the July 2007 National Conference we confirmed our Vision, Mission and Core Focus areas.

At the National Conference it was agreed that the organisation should review its governance structure to allow for a mix of representational and skill based directors.

These changes were endorsed at a Special General Meeting held on 27 October 2007.

HeartKids is currently experiencing a very exciting phase in its history as it moves to become the ‘public face’ of chidlhood heart disease. If you would like to suport us or be part of this process, please contact HeartKids Australia on 02 9487 8256.

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 unique in that it is the only organisation in Australia solely focussed on all aspects of chidlren’s heart disease. We are a registered Health Charity and have full tax concession status from the ATO. We aim to offer support to HeartKids and to families of children with heart disease, be it congenital (born with) or acquired. We have also partnered with leading cardiologists and researchers and are working to provide funding for them to assist in reducing the incidence of CHD and to improve the mortality rates currently being experienced.

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 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, with the help of members, sponsors and friends, has been able to help out the children’s hospitals and researchers by way of donations of money, equipment and research grants.

HeartKids has regional representatives who offer their time to arrange coffee mornings and special activities in order to support families with a child with CHD. Telephone support is also offered. Our aim in this area is to ensure that parents aren’t struggling alone. Please contact HeartKids in your state for support or to join these groups.

HeartKids produces a serieis of state based newsletters which update and inform our members on patient progress; special ‘heart family’ activities; government policy information of relevant, upcoming events and much much more. HeartKids newsletters keeps our geographically diverse membership aware and ‘close’.

HeartKids can assist with information about your hospital stay, for example information on available accommodation, meals, and transport and parking and in some cases can assist families financially in these areas. 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 coordinators. These coordinators 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. Please contact HeartKids in your state if you are visiting one of the children’s hospitals, or if you would like some support.

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