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Welcome to Hearts of Hope Australia

Welcome to Hearts of Hope Australia

Welcome to Hearts of Hope Australia

Welcome to Hearts of Hope Australia

Welcome to Hearts of Hope Australia

Welcome to Hearts of Hope Australia

Welcome to Hearts of Hope Australia

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We are a voluntary support organisation that was set up in 2002 by a group of parents with children born with HLHS. We offer non-medical support to all families with a child born with a heart condition that cannot be cured through medical intervention. This includes, but is not limited to, single ventricle anomalies such as Hypoplastic Left Heart Syndrome.

In order to provide better support to these children and their families, Hearts of Hope Australia was incorporated as a non-profit company in August 2004. We are a national Health Promotion Charity and have Deductible Gift Recipient endorsement from the Australian Taxation Office. If you would like to help us achieve our aims, please consider making a donation.

What's New

  • in eNews

    HoH eNews – AGM and Family BBQ (RSVP)

    Hearts of Hope Australia will be holding our AGM and family lunch at RCH in Melbourne in just under two weeks. Thanks to all of you that have responded to let us know whether or not you will be able to make it to our annual get-together on Sunday 19 February. If you are planning...
  • in eNews

    ANZFAC | Fontan Carers Group meetings

    The Australian and New Zealand Fontan Advisory is hosting meetings for the Fontan Carers Groups in Melbourne and Brisbane in February and March 2017. Have you ever wanted to meet other parents/carerswho have been through a similar journey to yourself? Come along and enjoy the company of others who are a part of the Fontan...

Supporting families living with complex congenital heart disease

Hearts of Hope Australia

Upcoming Events

1 in 100 babies are diagnosed with CHD

Latest Posts & Articles

Hello CHD friends - please take the time to read this lengthy post.

Today was a particularly tough day for us at Hearts of Hope. After posting an invitation for our annual BBQ and Angel balloon release on another HLHS support group, some very negative comments and questions were raised about what Hearts of Hope do. I thought this was a good time to explain to all of you that don’t already know.

Hearts of Hope was formed initially in 2000 by Jo's sister 'Deb' as a web page for Australian and International families to share their stories and offer hope and support to those people desperately searching the internet and finding nothing but doom and gloom. At that time there were no Australian survivor stories online and one of the Specialists looking after me in my pregnancy had even told me there were no survivors in Australia. We found out this wasn’t true and knew we needed to spread the word. People were writing their stories and Deb was making pages to honour and cherish those living with complex CHD and those that had passed away because of it.

In 2003 Csaba Ovari, father to Joe (HLHS) fully funded the setting up of an Incorporated Company because we wanted to do more. Csaba sought and gained deductible gift recipient status meaning all donations were now tax deductible and he applied for charitable collections licences in all states of Australia. We have been run by volunteer Directors and volunteer Executive Committee Members for the past 14 years.

I wish to give a few examples of the things we have done as a group and let you decide whether you think that because we didn’t visit families in hospital we therefore have no place to post on a group such as this.

We have provided Coaguchek machines to families that have applied for them and met the criteria (no application refused to date). We have provided iPads and other gifts to seriously ill children with complicated and lengthy hospital stays to help brighten their days. We have provided funding to assist with funeral costs for a child that passed away. We have consistently provided donations to Max’s Place to help with accommodating these families. We have donated tens of thousands of dollars to research projects through RCH thereby benefiting all babies and children with CHD. When requested by Heartkids we have provided families relocating to Melbourne with valuable groceries or vouchers. We have enjoyed the support of the staff at RCH and Heartkids Vic. In 2010 Csaba and I were invited personally by Christian Brizard to attend a national forum for the funding of treatment for HLHS and we represented all Australian HLHS families after conducting a very lengthy survey on all aspects of surgery and hospitalisation. These findings were very well received and our information was appreciated immeasurably as it was the first time anything like this had ever been formally collated from parents perspectives. We provide a bereavement support group which is very active with members. Every year we hold a family BBQ (mostly at the RCH) to coincide with CHD awareness day to bring families together. At our BBQ we love, honour and acknowledge all CHD angels by way of a balloon release with personal messages collected from all families for their CHD angels. We have done many other things and not least, set up the first HLHS/complex CHD support group in Australia that has been actively supporting one another for some 16 years now.

I would like to thank those of you that sent private messages of support today after the sad deterioration of my happy post about our annual BBQ gathering. The support means so much to all those involved with Hearts of Hope over the years but especially to Csaba, Judy and myself. Sometimes it’s really hard to keep going. Sometimes we struggle because we lose special friends to CHD. Other times we struggle when we are attacked in spite of all the good we have done. It’s really hard to keep going when there is so much administration work involved for Csaba and he has never received a single cent in return for the thousands of hours every year he puts into Hearts of Hope. We just hope that overall people are happy with the services we provide even though we can’t please everyone all the time.

If anyone still wishes to RSVP to our BBQ, we would love to see you there. We will continue to offer our support to all families that reach out for it. We don’t know you need us if you don’t tell us. If you have anything you wish to contribute to Hearts of Hope we would love to hear from you. We will always welcome all volunteers with open arms.

It’s one thing to attack other volunteers doing their best to support others but it’s another thing to put your hand up and be that volunteer. Please remember we too are travelling the road of complex CHD with our own children and we stand to gain nothing whatsoever from running Hearts of Hope other than knowing we have made a difference to some families where we could. We will never be able to help all families as we don’t have the volunteers or the funds required.

Thank you for reading. Heart hugs to all.
Jo Crisp (Mum to James, HLHS, 16 years old)
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Regarding the balloon release for chd angel children at our AGM/bbq on 29/2, parents who would like a special message to their heart angel included, please email Judy at lillisjudith@gmail.com judithlil@optusnet.com.au
Please reply by FRI 10/2
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