The camp is open to all HeartKids and their siblings aged between 12-20 years. Please fill out the online form below to register as either a participant or supervisor.
Once you are registered, you will receive more information about the camp along with details about payment options.

Location:
Milson Island Sport and Recreation Centre
Hawkesbury River NSW
Brooklyn NSW 2083

Date:
Friday 21st January – Monday 24th January 2011

Cost:
$100 for all HeartKids (any State)
$100 + travel costs for Siblings
( If you are experiencing financial hardship, please contact HeartKids to discuss options)

Recommended Readings and Links

Heart Conditions – Detailed information for parents

HeartKids is pleased to offer this new online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with details on health and nutrition, exercise, schooling, adult congenital heart issues. Click this link to view the site: Heart Conditions – Detailed information

Children with Heart Conditions

An excellent publication developed for parents of children with Heart Conditions
Children with Heart Conditions.pdf

Link: A Son’s Gift

External Links

• Heart Defects Simplified
• Congenital Heart Surgeons’ Society Data Center
• 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
• Long QT Syndrome
• Marfan Syndrome
• Marfan NSW
• Pediheart General Info on C.H.D.
• Velo-Cardio-Facial/Di George Syndrome
• Williams Syndrome
• Tracheo-Oesophageal Fistula, Oesophageal Atresia and associated conditions
• VACTERL Association

• Down’s Heart Group

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. 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

Information

Travel Insurance Cover for people affected by CHD.

CoverMore Travel Insurance Services offers travel insurance to children and adults affected by heart disease.

There are 3 options of cover. Simply click on the links below for the application forms for each level of cover.
Basic / Essential Cover: Essential Cover
Second tier / Travelsure Cover: Travelsure Cover
Top/Options Cover: Options Cover

Families are required to get their GP or Cardiologist to complete Page 4 of the application forms, which sets out details of their condition and treatment.

If you would like to know more about the different levels of cover, simply click on the link below to view and compare the cover plans from Cover-More Travel Insurance.

Cover More Plan Comparisons

Heart Conditions – Detailed information for parents
HeartKids is pleased to offer this new online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with details on health and nutrition, exercise, schooling, adult congenital heart issues. Click link to view: Heart Conditions – Detailed information

Children with Heart Conditions

A great online book for parents of children with a heart condition

Children with Heart Conditions

The forms below may assist you when your child starts childcare/preschool/school.
Parent__School_Information_Booklet.pdf

First_Aid_Action_Plan.pdf

MedHistoryForm.pdf

home page logos

Stories

HeartKid of the Month

Chelsea Mason. Our Heartkid: Chelsea as told by her mother Kate Mason

Having 2 girls already, we were pleasantly surprised to find out our 3rd planned pregnancy was twins, and yes, 2 more girls! Our world soon began tumbling down when one of our twins was diagnosed with a very complex set of heart defects, at my 26 week ultrasound. My only worry was if my little girl would be here for the long term as I loved her already.

We were referred to the Women’s and Children’s Hospital Cardiology department, in Adelaide, for follow up. A very thorough echo was performed and we were able to meet with Cardiologists, Clinical nurses and social workers in the weeks leading up to the birth. The information we obtained from Cardiology did give us some reassurance that our little girl was more than likely going to survive and have a good long term outlook. This helped prepare us for everything that was likely to happen. I spent many late nights scouring the web for everything I could find. It was all consuming. I then decided to record our journey. Somehow writing it all down was good therapy and looking back, it has been valuable to read about everything Chelsea and our family went through.

We were told her heart condition was reasonably complex. Our little twin b (as she was called in-utero) was diagnosed as having double outlet right ventricle, a large ventricular septal defect and critical pulmonary stenosis. I recall thinking this was a whole lot of things for one tiny little baby to deal with.

Chelsea and Amelia
Finally the day came for the twins to be born. They were delivered by planned c-section with so many people present in theatre it felt like a stage show! We had the head of paediatric neonate intensive care, paediatricians and nurses for each of the twins, aneasthesia staff and the theatre team along with my husband Jeff and my obstetrician. The delivery went well with Amelia born first at 2.2kgs and our little heart baby Chelsea arriving two minutes later at 2.1kgs. She was reasonably blue, but we expected that to be the case. They were checked over and Chelsea was taken for an echo, then to the intensive care unit for the prostaglandin to be commenced. This was the drug that would ensure her duct would remain open until she could be transferred to RCH Melbourne for a shunt procedure. For the next week, Amelia roomed in with me in hospital (a very easy baby, thank goodness!) and Jeff looked after the other two children at home. We all shuffled back and forth between my hospital room and intensive care to see Chelsea. It was overwhelming for our big girls with mum not at home, two new sisters one of whom was surrounded by complex monitoring systems. We did our best to normalize everything for the girls and keep our brave faces, but inside we were pretty fragile.

Chelsea holding her mummy’s hand
Chelsea was on the small side for heart surgery and it was decided that she would be kept in Adelaide until she gained weight. All good in theory but on day 5, complications started when Chelsea was diagnosed with an infection in the bowel, which, as we were to discover would require operations in the future. This often affects preterm babies, particularly those who are unwell from other conditions and where oxygen to the organs is compromised. As she was critical we were asked to stay very close to the hospital in case they were developments. We were told that although it had been detected very early, it could go either way. My own frantic research on the web discovered that babies have a 50% chance of survival. Oral feeds were stopped and she was administered massive doses of antibiotics to try and stop the condition. It was these unexpected extras that were horrifying. She may have done ok with her huge heart hurdles but we were well aware that other complications could come and destroy our hopes & dreams without warning.
Needless to say, there were so many mixed feelings about that time. We were totally besotted with both our new little babies but also absolutely distraught with worry about how Chelsea would handle all of the challenges she had in front of her.
Over the next week, the bleeding in her bowel stopped and she began to improve. The medication had worked!

Around 2 weeks, Chelsea started having heart racing episodes. After a few tests and lots of observation, it was concluded that she had an arythmia. More medication was required and within a week of adjusting meds and doses, her heart started to behave more consistently.

The journey continued with more steps back & then eventually forward. We were starting to become accustomed to life with a sick child. By the beginning of February, Chelsea had managed to gain weight and was ready to go to Melbourne.

Chelsea arrived in Melbourne with the Flying Doctors around the same time as us and was sent off for surgery the very next day. That was the darkest few hours of our lives – WITHOUT A DOUBT – EVER! We had no idea whether our beautiful daughter, who we had never taken home, held properly in our arms without tubes & beeping machines etc, would ever wake up and come out of heart surgery alive. It was so distressing and I felt like I was going to pass out or have a heart attack myself with the pain of leaving her with the surgical team.

Anyway, we dragged ourselves away and tried to keep ourselves distracted by getting some grocery shopping done – we had a family to feed!
After what seemed an eternity we got a call from the surgeon to say that the procedure had been successful and that we could see her in paediatric intensive care unit in one hour. The relief was unimaginable! We went down to see her but were kept waiting for over 2 hours. At one point a nurse came rushing out to tell us that there had been some emergency complications and they were having to re-open her chest right there in the intensive care unit. Our hearts sank. We honestly thought were about to lose her. About half an hour later, we were told to come and see her and that she was fine. We were told her shunt had formed a blockage and that they did indeed have to re-open her chest to remove the blockage. When we entered her little chest was still open, but covered with film. The surgeon told us that the next couple of hours would tell us whether or not the operation was successful. Thankfully Chelsea managed to get through that next couple of hours and it looked as though everything was going to be all right. Relief again! What a rollercoaster!

Chelsea after surgery
When we went in to see Chelsea, she looked almost unrecognisable. Her face was bloated, swollen and bruised. Her chest was still open with a wound drain hanging out. I was overwhelmed to see so many lines hanging out of her little arms and feet, along with numerous beeping machines and monitors including the ventilation unit. We felt so many emotions. We really felt for our tiny girl, who had already had her chest opened twice and had all these tubes and machines keeping her alive. I kept having flashes of losing her and thinking she may not live a life with her other 3 sisters. All the while, we sat holding her little swollen hands, tears of happiness streaming down our cheeks, thankful that at least she had made it through this first heart surgery.
The next few days, Chelsea raced ahead and amazingly got clearance to fly back to Adelaide on day 5! She returned to the Women’s and Children’s Hospital. She needed to recover and of course she still needed her bowel fixed. Unfortunately Chelsea soon took a few steps backwards. She showed signs of being unwell a few days after returning from Melbourne. She was very pale, almost grey looking. She had developed some sort of gastro bug and started going downhill very fast. Our cardiologist said the surgeon was pessimistic about the upcoming scheduled bowel surgery, but would review the case in the morning.

When we arrived in the early hours of the next day, Chelsea looked much worse. The surgical team came to review her and the head of surgery told us the surgery would be postponed and that he thought she looked ‘awful’! Before too long, the cardiology team arrived as did the team of intensive care doctors. Orders started flying around and a flood of nurses swarmed over Chelsea’s bed. The consultant in charge ordered an immediate blood transfusion, fluids and two broad spectrum antibiotics. I remember thinking we had just about every available person in intensive care attending to Chelsea in some way.

Next the results came back from her echo only to reveal a cyst type mass on the outside of the heart. Another more thorough echo was ordered and the cardiologist’s early diagnosis of the ‘thing’ was a pericardial cyst. Treatment would need to be carried out in Melbourne, presumably resection or drainage. By this time we had almost had enough. Our poor little darling had really been put through the wringer. It seemed there was an ever increasing number of hurdles she was having to jump. When would it stop?
As the week progressed, Chelsea improved in spirit, but her belly was really playing up. It became quite distended and hard lumpy bits of her bowel starting showing through her tummy. All the while, the surgeons were on standby for emergency surgery. Over the weekend she improved and surgery eventually went ahead. Once again we had to leave her with the surgical team. Lots more tears. We waited and waited, trying to distract ourselves. Eventually the surgeon phoned to tell us that a large stricture on the right side of her bowel had been successfully removed. The two ends had been rejoined and she had been stitched up. Our little girl was now the proud owner of 2 big scars but she had made it!

Chelsea was soon transferred to the ward and eventually, on day 65, we were able to bring our baby girl home for the first time. It was a magical day, particularly for our older girls who were desperate for our whole family to be together again.
The next few months were very demanding, with 4 children under 3, but blissful for us all to be at home together. We were totally sleep deprived but felt truly blessed. After nine months of regular visits to Cardiology Clinic, we were referred to Melbourne once again for further surgery. Our emotions soon started to spiral out of control once again as the fears of surgery were contemplated.

The day soon arrived and we all headed off to Melbourne. Two grandmothers, 4 children, Jeff and I flew to Melbourne where we had to rent two apartments. Unfortunately, due to a shortage of intensive care beds and nurses, days turned into weeks as we waited and waited. This was incredibly stressful, as Chelsea had her surgery cancelled 4 times! Finally a lengthy bypass surgery was performed, which all appeared to go well. However little Chelsea didn’t respond as well as everyone would have liked. Her heart, whilst repaired, was not functioning well. We were told this was not uncommon after a major surgery as a swollen heart and lengthy bypass surgery can cause the heart to take a little while to work correctly. As a result they decided to re-open her chest to take some of the pressure off! Oh not again!

Over the next week Chelsea made a few baby steps forward each day and after a long week in intensive care, she was finally transferred to the ward before returning to Adelaide a few days later.
It was so good to be home. Chelsea had a hard time recovering over the following weeks. Naturally, she had pain in her chest. Slowly she improved and today you just wouldn’t know by looking at her the many trials she has had to endure. How these heart kids get through these immense ordeals inspires, amazes me and overwhelms me.

Lately there has been some concern over her pulmonary artery. Her surgeon and Adelaide cardiologist have said that she may need more surgery but this will depend on how her heart grows and develops.

For the moment, she is home and we are ready to celebrate life for a while!

Today, Chelsea has turned the corner. She is well and developing both emotionally and physically. She is not yet crawling, but is finally sitting up. Her cardiologist anticipates she won’t need further surgery for at least 2 years! Furthermore, we don’t even have to attend cardiology clinic for another 6 months! What a relief!

It’s difficult to describe how emotional, stressful and heart-wrenching our journey has been this year, for our whole family. The journey has come at a huge cost to Jeff and me, both emotionally and financially, with many flights and a total of 5 weeks in Melbourne.

Our older girls had to give up their activities, swimming and playgroup, and we isolated ourselves from family and friends for fear of bringing any ‘bugs’ into our home and therefore jeopardizing Chelsea’s chance of survival. More than any of that, our darling Chelsea has had to endure so much to her tiny little body, all because she won that lottery that no-one would ever want to win. It’s very likely she’ll need ongoing valve replacement heart surgery throughout her life.
Family – finally together at home

HeartKids has supported us throughout this journey. We are most appreciative of the work of their Family Support Coordinator and all the services they provide to families like ours. Whilst our journey appeared unique, we encountered scores of others enduring similar trials. Heartkids South Australia has also allowed us to meet many other wonderful families who have shared similar painful experiences and helped relieve our self imposed isolation. We cannot thank the Adelaide Women’s and Children’s Hospital, the Royal Melbourne Children’s hospital and HeartKids SA enough, for their support and dedicated work for children with CHD.

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

Jensen Ashby – Our Little Miracle

I never imagined that I would have another baby, so when my test came back positive I was thrilled…scared but thrilled! It had been 14 years since my last baby, who was born completely healthy with no complications and I just assumed this baby would be the same.
My pregnancy progressed uneventfully, we had all the tests and everything was looking good. I remember going to the 18week ultrasound and all we could talk about was whether we were going to have a girl or another boy. We were definitely not expecting what was to come. The sonographer took such a long time looking at our baby’s heart from every possible angle until I finally plucked up the courage to ask if something was wrong. He told us that he needed to have a good look and send the report to our obstetrician. We received a phone call that afternoon to meet with our obstetrician first thing in the morning. This was at this point that we knew something was seriously wrong!
That night we slept little and cried lots, not knowing what was wrong with our baby, we just waited and waited for the morning to come. We thought that it was the longest night ever, but looking back, it was just one of many long, sleepless, tearful nights.
We were told that our precious baby boy had a serious heart defect called Transposition of the Great Arteries or TGA. The main arteries, the Aorta and Pulmonary Artery were in the wrong positions, which meant that while he was still inside the womb it wasn’t an issue but once he was born the oxygenated blood would not be delivered to his vital organs. He would need open heart surgery, a procedure known as an Arterial Switch for him to survive. I just sat there and cried, not knowing what this meant and not knowing what my baby’s chances of survival were and not knowing how we would ever be strong enough to deal with this.

Suzanne and Jensen

We were then referred to the Royal Brisbane and Women’s Hospital to meet our baby’s cardiologist, Dr Alex Gooi, who told us that our baby had standard TGA with no signs of other defects. Once he was born he would have to have a procedure called a Balloon Septostomy to allow the blood to mix to keep him alive until his open heart surgery, which would probably be scheduled for a month after he was born. We were also advised that the success rate for the Arterial Switch was higher than 90 per cent and that our baby should be able to live a normal healthy life if there were no further complications. We left there feeling completely exhausted, but slightly relieved that the prognosis was so good.
The rest of the pregnancy was difficult. Physically everything was going really well. Health-wise I was feeling great…but mentally, not so good. Most days I was positive, but on other days I would just sit and cry and imagine what it would be like to have my baby taken away to have major heart surgery. I also imagined the very real possibility that my little boy may not make it and I quickly tried to dismiss those thoughts before they ate away at me. I wondered how this could have happened to my little boy, was it something I did, or didn’t do, something I ate, vitamins I didn’t take???? The medical answer is that it is completely random and could happen to anyone and could not have been prevented. But even that thought did not make it any easier.
The day came for my scheduled caesarean section and we were a bundle of nerves. We had been staying at the Ronald McDonald House in Brisbane for the previous two weeks and walked over to the hospital to face the most difficult times of our lives.
Jensen Jeffrey Ashby was born 8 pound 11, in a theatre full of medical staff and was very, very blue. I was not able to hold him. I saw him briefly before they rushed him away. I was taken up to see him a few hours later and was told that he wasn’t doing very well, the balloon septostomy didn’t work and his oxygen levels were very low. They were in the midst of discussions with the staff at the Prince Charles Hospital as to what they should do. The next morning his oxygen levels were so low that he was taken by ambulance to the Prince Charles for emergency open heart surgery. I hadn’t even had a chance to hold him.
We drove to the Prince Charles to meet with the surgeon, Dr Andrew Clarke who advised us the risks of the surgery. To be quite honest I don’t really remember much of what he said, the staff were in the background saying that they had to take him immediately, as he was getting worse. One thing I do remember is being told by a staff member that there was a possibility that he could die, but they would do everything they could to help him. I was taken over to give my little man a kiss before he was rushed away..again.
Jensen was in surgery all day. All we could do was wait, hope and pray. Finally Dr Clarke came out to tell us that it was successful and we could see him shortly. I wasn’t prepared for the sight I saw. So many tubes, machines, lines, doctors, nurses, lots of blood and a very puffy, swollen little baby. It was horrible, but he was alive!
Over the next week, there were various complications, a major bleed, renal failure, problems with his lungs and he still wasn’t improving. His chest was closed, then re-opened because he was still very swollen. We kept waiting to be told that he was on the mend, but nobody could tell us that. Instead we were advised that he had Pulmonary Stenosis, his pulmonary artery was narrowed and he needed another operation to widen it. So off he went for his second open heart surgery in less than 2 weeks.
This one was a little easier, as we were told that the risk of him not making it through this surgery was around one percent. I was so happy when he picked up almost immediately after the second surgery. We spent one more week in ICU where we finally got our first cuddle at almost 3 weeks old. We were then transferred to the ward and went home a week later.
We were told that there was a chance of Jensen having Cerebral Palsy because of the low oxygen levels, so we have been having regular physio and paediatric appointments and were told we would not know whether he had the CP or not until he started walking (or not walking) He was slightly behind on his milestones, so there were some concerns, but on Boxing Day, a few weeks before his first birthday Jensen took his first steps.
We still have to see Dr Alex Gooi every 3 months for a check up at this point, as there is still some narrowing of his pulmonary artery, but the good news is that the artery is growing. There is always the possibility of more surgery down the track, but our fingers will be forever crossed. Thanks to Dr Alex Gooi, Dr Andrew Clarke, all the staff at the Prince Charles Hospital, the Royal Brisbane and Women’s Hospital, Ronald McDonald House, obstetricians, HeartKids Queensland Family Support Coordinator Silvia Stohr and the sonographer who discovered the defect so early…we know have a gorgeous, happy and healthy little boy.
Our special thanks are extended to HeartKids for their ongoing support and for the work they are doing to ensure less children like Jensen are born with CHD.

No presents please.. I am just about to turn one and am happy to be alive!

Little Jensen is just about to turn one.. He and his family have asked that donations be made to HeartKids in leiu of presents!

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.

Elizabeth’s journey

My name is Effie Heldzingen and I have a Heartchild called Elizabeth.
Elizabeth was born at St George Public Hospital on 9th November 2005
Her doctors noticed our baby was distressed and they decided at 8 ½cm dilated that I have an emergency caesar.

The caesarean was all a bit of a blur to me as I was in a daze. However I did see our daughters face for a split second, and all I could hear in the background was its ok, keep breathing little one then I had a feeling that something was wrong.

When Elizabeth was born she didn’t cry straight away and she was blue and floppy. She was then taken to the special care unit to be monitored. I still had not held my baby in my arms and when I came back from the op theatre she wasn’t there.

They told me she was still in special care and they would let me know how she is. At 3.30 am we were told that she may have a heart condition and that Elizabeth would be taken to Sydney Children’s Hospital via nets to have further tests.

My husband and I were speechless, I still had not held my baby and was so distressed. They brought her into the ward for me to see before they took her away, I wasn’t able to hold her but just seeing her from a distance made me feel so happy and sad at the same time.

Leslie went with Elizabeth with nets to SCH and he called later on in the morning to inform us that she has been diagnosed with 3 Complex Heart Conditions
1) Transposition of the Great Arteries(TGA)
2) Ventricular Septal Defect(VSD)
3) Pulmonary Atresia

These heart conditions are common on there own however its a one in a million chance that you would get all these three conditions at once.

I was transferred to the Royal Hospital for Women’s later that day so that I could be closer to our daughter.
A meeting was scheduled with the Surgeon and Cardiologists to discuss Elizabeth’s conditions and we were told that there will be 3 operations to take place.

Elizabeth had her 1st Procedure called BT-Shunt at just 2 days old. Then at 1 year she had the 2nd Operation – Glen Procedure which was aborted half way on the table as Elizabeth’s heart had swollen from 13 to 20. The Glen Procedure was rescheduled 3 months later and proved to be a success.

Elizabeth always had a smile on her face – despite the pain and discomfort

Her 4th Operation will be when Elizabeth is about 4-5 years of age and this operation is called the Fontan Procedure.
Her doctors noticed that Elizabeth has a leaking valve which may cause some concern long term and further down the track she may need a pacemaker.
Being given all this information at the time was all confusing and trying to understand all these complexed heart conditions was frightening. We both wanted to know more but to find information was extremely difficult.
More and more children are being diagnosed with Childhood Heart Disease and we as parents of a Heartkid are amazed at the lack of awareness out there for our children as its the biggest killer of all.
Leslie and I would like to thank HeartKids for giving us the opportunity to learn from other families with Heart kids.
When Elizabeth’s 2nd operation was aborted we were devastated. Karen Sherlock, the HeartKids Family Support Coordinator, was there to support us even though we crossed paths in and out of the ICU unit but she was there and that gave us inspiration. Thank you for your kindness and thoughts Karen. You are wonderful!!
We are so lucky that we have a big family unit with lots of support to go around. Not to mention the Doctors and Nurses who guided us along the way.
I guess we are all given situations in life and we are more than capable of dealing with them. Sometimes it can be hard to accept but other times it makes you appreciate all that you have in life.
This is why it is so important to support a charity like HeartKids. HeartKids provides support to families, raising awareness in the community and donating much needed funds to research.

I update Elizabeth’s website as often as I can please feel
Free to take a look and see what mischief Elizabeth is up to:
go to http://www.heldzingen.com/elizabeth

Regards Effie, Leslie and Elizabeth Heldzingen

Please support Elizabeth 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 HeartKids

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.

Video message from the CEO about HeartKids

Latest News

Cuppa for HeartKids is on again!

Join in the fun and host a Cuppa for HeartKids throughout August and September. Simply click on the teabag below to register and receive a pack full of goodies to make your event a special one.

Spring Garden Tour

We invite you to an exclusive tour of Sydneys most unique garden
Six stunning gardens presented by Sydney’s leading Landscape Designers.
October 22nd 2010 – 8am till 5pm
$200 per person with all proceeds directly to HeartKids
Strictly limited to 100 guests only.
Click here to purchase tickets

REGISTRATIONS ARE NOW OPEN FOR 2011 TEEN CAMP Register online by clicking the link below 2011 Teen Camp

HeartKids announces New Major Sponsor – Retail Food Group

HeartKids is thrilled to announce a new major sponsorship with the Retail Food Group (RFG). This will enable us to expand our support of families with kids who suffer from heart defects.
The partnership is the first time the six RFG brands – Donut King, Michel’s Patisserie, Brumby’s Bakeries, Brumby’s GO!, bb’s cafe and Big Dad’s Pies – have come together for one campaign….

Brave little Amy loses her fight.

Sadly little Amy Dawson has lost her fight for life succumbing to her heart condition just 3 days before she was due to fly to the US for revolutionary treatment. HeartKids has been overwhelmed by the public support offered to her and her family. Over $55,000 was raised to support her family. HeartKids will now offer to support the family in their time of need. Unused donations will either be returned to donors (if requested) or used to support the many thousands of other families affected by Childhood Heart Disease each year.

Heart Conditions – Detailed information for parents
HeartKids is pleased to offer this new online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with details on health and nutrition, exercise, schooling, adult congenital heart issues. Click link to view: Heart Conditions – Detailed information

Heart kid of the Month – Crispin Caoyonan

This is the journey of little Crispy, aged 11 months. A tough little fighter who has endured so much already in his first year of life.
He will celebrate his first birthday in April…
The story is written by his mum Kelley Caoyonan. Click here for the full story

ASDM – new national partner

We are delighted to announce ASDM as a new national partner.

Read more..

Canon Supporting HeartKids

HeartKids recently received an incredibly generous donation of photographic and office equipment by Canon. Equipment included digital cameras and printers. These will be placed in each of the major children’s hospitals and be available for parents to capture and print their precious moments with their children. In addition Canon provided printers and consumables for all the State Offices.

Read more..

Ronald McDonald House Charities supporting HeartKids

Ronald McDonald House Charities has recently informed us of a variety of wonderful programs that are available to heart kids and their families.. read more..

New National Phone number… If you would like support or if you would like to support HeartKids phone 1800HEARTKIDS (1800 432785437)

Celebrate and support HeartKids with this special wine offer

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.

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

ABN 72 652 162 549

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: PO Box 803
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.

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

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 1800HEARTKID (180043278543) or download and complete the attached forms.

Phone donations can be made by calling 1800HEARTKIDS (1800432785437)

Cash and Cheques should be posted to HeartKids Australia PO Box 204 Wahroonga NSW 2076

To make an online credit card donation, please complete the form below and click Donate Now button:

Note this takes you to a secure website

Tax Deductible Receipts will be sent out for all donations.

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 1800HEARTKIDS (1800432785437)

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

Each year approximately 2,000 children are born in the Australia with a heart defect. Prognosis and life expectancy of these patients have greatly improved over the past decades, especially as a result of the development of new operative techniques. As a consequence of the successes of cardiac surgery, the majority of these children now reach adulthood. This implies the emergence of a new category of patients: adults who were born with a heart defect (congenital heart disease). A rough estimate of the current number of adults with congenital heart disease in the Australia is between 26,000 to 32,000 patients. This number is growing steadily at a yearly rate of approximately 5%. In addition, there are an estimated 32,000 children (<18yrs) with congenital heart disease. Thus, the total number of living patients born with a cardiac defect is approximately 62,000 individuals.

Since it concerns a new, rapidly growing, patient population with often substantial (postoperative) morbidity it is important that comprehensive knowledge regarding the specific problems of this category of patients is available. A national registry would make an inventory of the epidemiology and specific morbidity of adult congenital heart disease at a national level.

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

Annual Reports

2008/2009 Annual Report

Annual_Report_2009_Final.pdf

2007/2008 Annual Report

Annual_Report_2008_PDF.PDF

2006/2007 Annual Report

Annual_Report_HKA_web.pdf

Our partners

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

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

HeartKids Australia Board - 2009

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 Chair: Lee Morgan
• Treasurer: Matt Tognini
• Directors: Michael Johnson, Matt Turner, Anthony Elmore, Des Hammond, Scott Reinke

• Board Secretary and Chief Executive Officer: Neil McWhannell JP

Board Member Profile

Stephen Shepherd – Chair

Business Coach, Shareholder, Director and Chairman of Shirlaws Business Coaching. Stephen began his career as a Chartered Accountant working for KPMG and NAB. Whilst he coaches a wide range businesses, Stephen has developed a specialty in working with mid tier professional service firms. Stephen also facilitates strategic retreats, CEO workshops and coaches several CEOs. He has a passion for creating space for companies and their owners to grow both commercially and culturally. Stephen is married with 2 children.

Lee Morgan – Director

Manager of the Special Infrastructure Projects, within the Aboriginal Affairs and Reconciliation Division of the Department of the Premier and Cabinet for the State Government of South Australia. Lee has a Professional Certificate in Business Management; Graduate School of Management from Adelaide University, Associate Diploma in Applied Science; Conservation and Park Management from University of South Australia and a Technicians Certificate in Surveying. Lee has served in a range of managerial positions for SA Water Corporation and the Environment Protection Agency. Lee is married and has a son who is a heart kid.

Scott Reinke – Director

Managing Director of Intandem. Scott has a Certificate in Direct Marketing (ADMA) and a BA. He had a wealth of senior management experience, serving as General Manager Health Benefits & Marketing Divisions for Medibank Private, Head of Marketing at the Bank of Melbourne, Marketing Consultant at Publicis Mojo, Managing Director at Communication Insights Pty Ltd and Head of Marketing Retail Bank Division Commonwealth Bank of Australia – Sydney. Scott is married with 2 children one of whom is a heart kid. Scott is currently also serving as President of HeartKids Victoria.

Our History

Around 30 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 support us or be part of this process, please contact HeartKids Australia on 02 9487 8256.

Our Vision and Mission

Our Vision

Life unaffected by Childhood Heart Disease

Our Mission

As the public face of Childhood Heart Disease (“CHD”) and through our active partnering with the medical community and Government, Australia will adopt best practice in the intervention, treatment and support for all those affected.
This will result in a reduction of incidence, decreased mortality, significantly improved quality of life and best outcomes for those affected by CHD.

This will be achieved through our work in support, awareness advocacy and research.

Who we are

We are a young and very special charity solely focussed on Childhood Heart Disease (CHD)

HeartKids Australia works to:

• Support families who have a child with heart disease
• Reduce the incidence of Childhood Heart Disease

• Decrease the mortality rates for Childhood Heart Disease

We do this by:

• Employing Family Support Coordinators in each of the major children’s hospitals throughout Australia
• Running Family and Teen activities
• Funding Research into CHD
• Providing equipment and facilities
• Assisting families with travel and accommodation needs
• Commissioning a White Paper into the needs of CHD from a clinical and community perspective

• Advocating the needs of CHD to Government

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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