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Kids living with a heart condition are brave @Heart. They show strength and courage in the face of incredible illness and pain.

Here, you can share in the experiences of some of New Zealand's heart kids, heart teens and heart adults, read their own words and see their artwork.

Contributions are welcome - contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

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Jessie Gordon

I was born with pretty much half a heart. The right chamber didn't form properly and at just three days old I had my first heart operation.

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Eleanor Pepper

I have a six centimetre scar which runs down my chest. Most days I forget it's there. It has become a part of who I am, just like the heart condition which caused it. I have gotten used to living with both.

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Emily Domett

Emily’s story is different to most and shows that heart conditions can happen to anyone and you just never know what is around the corner.

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Blake Campbell

Blake's chest rattled and he was born with a hole in his heart. I got very used to telling others that he didn't have a chest cold but a very loud VSD.

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Caleb Murphy

From birth, Caleb struggled with breathing, eating and had many trips to hospital by ambulance because he couldn’t breathe.  The most scariest moments were when we had to do CPR on him and when his Aunty had to “bag him” to keep him breathing.

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Hannah Wakelin

It is always hard when you have to say goodbye to something. It is even harder when that thing has brought you so much enjoyment and so many friends over the years.

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Karl Newton

Karl's journey began with the first nine months of his life being a sickly baby. He had to see the doctor at least once a week due to the various bugs he picked up.

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Jazmyn Gnaniah

Jaz, our lovely little princess was born on 11 April 2011 at Auckland Hospital.  We and the rest of the whanau were delighted at her arrival.  However, our delight soon turned to despair.

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Joshua Bedonia

Joshua had been an active young boy who enjoyed the outdoors and kicking a soccer ball. But all that changed when he acquired a heart condition as a result of Kawasaki disease.

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Sophie Carter

Despite having a heart condition, Sophie Carter (18) carries a positive attitude to life. She gives everything a go and never hesitates to undertake challenges, as demonstrated by her completion of the Bronze and Silver levels of the Duke of Edinburgh's Hillary Award. 

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Steph Woods

It is funny how our passions as adults are so strongly driven by our childhood experiences. The things we are scared of as children can hinder us in adulthood and the things we enjoy help form our dreams in life.

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Taryn Kelly

As you know all too well, growing up with a heart condition is not the easiest thing to do. It is a journey of ups and downs, adversity, strength and hope.

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Josiah Cambridge

I remember laughing when the dating scan put Josiah due around the 10th February 2010. "God has a sense of humour and since I hate Valentines Day I bet that is when he will be born," I said. The 19 week anatomy scan didn't involve any laughter. It was then we were told that Josiah's heart was not normal.

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Petra Jacobs

My name is Petra Jacobs and I was born on 14 February 2010.  A week before I was born, my parents found out that I had a congenital heart defect.   They didn't know much about my heart condition until a full diagnosis was given soon after I was born.  I have right heart hypoplasia causing pulmonary atresia, Ebsteins tricuspid anomaly among other issues. There is neither prevention nor cure for my heart condition.

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Max Wiffen

When Max was born on 14th February 2007 he was perfect at a healthy 10lb 12oz!  Or so we thought.  He showed no sign that in 12 hours he would be rushed away to NICU after turning blue - what followed was a roller coaster neither Matt or myself were prepared for.  That night we were given the diagnosis - Tetralogy of Fallot.

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Merapi Uangakore

Merapi is 7 years old. Like many other little girls of her age, Merapi loves nail polish, singing, drawing, dressing up, and playing with her pet rabbit.  Unlike other children of her age, the place that Merapi has frequented most is not the playground or her school, but the paediatric cardiac unit at the children's hospital in Auckland.

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Sam

First time parents TJ and Lopeti Brown couldn't wait to take their newborn son Sam home.  With bags packed they waited excitedly for the Doctor's final okay.  But TJ and Lopeti didn't take Sam home that day, nor the next day, or the day after that.  Instead of moving out, TJ and Lopeti moved in and for three long months their days became a blurred mix of good days and bad days, tests, sadness, joy and fear.

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New branch on the way

It's been three months since Greymouth's Tania Bugler was asked to take on the role of Family Support Worker for the West Coast.  In that time, the Mum of three, has established a Support Group for local heart families, held the Coast's first ever Heart Stopper Challenge and gathered...

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Molly

The 20 week scan is supposed to be one of the happiest days for a soon to be Mum and Dad. It's the day you get to see the first glimpses of your unborn child.  For first time parents Becks and John it was the day they found out they were having a girl and the day they found...

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Lili

Lili is 12 years old.  Like most twelve year old girls, a good day for Lili is hanging out with friends, playing sports, going to school, going to church and being with her family. Lately Lili's definition of a good day and a bad day has changed.  Lili's sore throat,...

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Jake

The first indication that something was not as it should be came during Jake's two week check up with the local Plunket Nurse.  "I see enough healthy babies to know that this wee man is not," she said.  These words would be remembered fifteen years on, as clear as...

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Lucas' heart story

The following passage, written by Lucas' Mum Jenny, is a touching account of one family's story behind the statistics … a glimpse into the good days and the bad days of a family living with childhood heart disease. Lucas was eight weeks of age when we took our very...

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Introducing Finley Schumacher Sundberg ...

... Heart Rider extraordinaire This November four year old Finley Schumacher Sundberg will ride 5km in New Zealand's second largest outdoor event, the Wattyl Lake Taupo Cycle Challenge.  Athletic at heart, Finley broaches even the smallest of life's activities with a...

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Matthew Blackwell

Matthew's story as retold by his Mum. When Matthew was born he found it difficult to breathe. He spent that first night in the neo natal intensive care unit so medical staff could keep an eye on him.  But by morning his limbs had taken on a disturbing bluish...

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Matt Munro

A week before Matthew made his way into the world in May 1996, we realised there was something wrong with his heart. We were referred to Middlemore Hospital, where the registrar was amazed by Matthew's chaotic heart rhythm. The following evening he was induced and born after...

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Zac Lutter

Zac Lutter was born 22nd February 1997, third child to Rob and Maureen and a brother for Jan (4½) and Tim (3).  When Zac was born there were seven things wrong with his heart.  "We did not know what a heart child was and thought that heart conditions were only an...

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Step up to the Crease

Hi there, Our daughter, Lucy, (11 months) was born with a congenital heart condition called Tetralogy of Fallot.   That's a condition with four heart defects.  Lucy's needed three operations with another scheduled in just a few days.    ...

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Jaden Knight

Jaden was born on March 6 1998 at Rotorua Hospital. There was a slight murmur noticed by the doctors present at the birth. On Monday March 9 the murmur was noticeably worse and the decision was made to send him to Starship Hospital in Auckland for further diagnosis. He was diagnosed as...

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Larissa Cox

Hello, my name is Larissa Ella Cox and I am now two years old. Here I am with my 8 year old sister Saskia. We are sitting at the Kerikeri BNZ where we helped to swap chocolate hearts for gold coins during the Awareness Week. We are looking forward to eating more chocolate...

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Kezia's Story

My mother once told me that having a child with a heart condition was a little like buying a ticket to Italy but ending up in Holland instead. Not quite the trip that was intended but an interesting and challenging journey anyway. Hi my name is Kezia Lockhart and I'm going to tell you a little...

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Sam Holden

In September 1998, 9 year old Sam Holden went to Catalina Island off the coast of Los Angeles to take part in a camp for children with heart disease. "Hi, my name is Sam. As you have probably heard five New Zealand (Wellington) heart kids went to America for 11 days to a five day camp on...

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Pictures & Stories from Heart Kids

 

 
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Plunge into an icy pool to help heart kids. Form a team of 4-6 people, dress in fancy costume

Camp Teen Beat is a week-long camp for teens@Heart aged between 13 and 17 to do adventurous things and mingle with like-minded

 
 
 
 
 
 
 
 
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