Stories | Stories

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.

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Children's Profiles
Pictures & Stories from Heart Kids
Heart Adult Stories
Zipper Kidz

	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. Read More
	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. Read More
	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. Read More
	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. Read More
	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. Read More
	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. Read More
	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. Read More
	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. Read More
	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. Read more
	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... Read more
	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... Read more
	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,... Read more
	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... Read more
	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... Read more
	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... Read more
	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... Read more
	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... Read more
	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... Read more
	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. ... Read more
	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... Read more
	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... Read more
	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... Read more
	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... Read more

This part of the website is for pictures and stories by heart children. You can send your stories and pictures to @Heart Inc, PO Box 108 034 Symonds Street, Auckland, or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

By Nadia

Thank you Nadia for your lovely picture.

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By Simon

Thank you Simon for your lovely picture.

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By Adrianna Joyce

Thank you Simon for your lovely picture.

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By Heather Hamilton-Irvine 15 years

Thank you Simon for your lovely picture.

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My Special Sister

My sister Joannah is very special, because when she was born, she only had half a heart. Where as other normal people have 4 chambers in their heart, Jo only has 2. The condition that she has stopped us from doing many things as a family, eg: bike rides. As a result of this Joannah had to...

Songs

The following song lyrics were written by Sharon Kortas about her daughter Michelle, who died of Batten Disease two years ago. Michelle also had Down Syndrome and an AV canal defect operated on successfully at Greenlane when she was two. Sharon maintains a home page in memory of Michelle at...

Clem Campbell's Story

On February 10th 1999, my younger brother Clem Michael George was born at Christchurch Women's Hospital. He had a little trouble breathing so he had to go up to the neo natal unit so the doctors could monitor his breathing. About 10am, my Grandmother and I went to see Clem. It was the first time...

	Introducing Scott Murray... My name is Scott and late last year I celebrated one of the biggest and happiest days of my life - my 21st birthday. It was everything I could have hoped for. I was surrounded by all my friends and family, laughing, dancing, singing and having a great time. My friend Polly... Read more
	Wendy's Story I will never forget the moment I woke up after surgery... I could hear people talking, but I couldn't open my eyes. I didn't know where I was, and when I tried to move, I couldn't feel my body! A voice told me: "Wendy, you're in hospital and you need to just... Read more
	Jacqui's Story Even though I am writing this as a 35-year-old mother to two gorgeous girls, I too am a heart child. I was born in 1974 and was the child that everyone wanted to baby-sit, as I slept soooo well! My heart defect wasn't picked up until I was four years old. Atrial Septal Defect for... Read more
	Shelly: Growing up with a congenital heart defect My name is Shelly. I was born on September 5 1961, in Auckland, New Zealand and weighing 6lb 2 oz. I am still small being only 4 foot 11 inches tall and weighing around 42kgs. I wear a tiny size two shoe. My parents were told that I was a healthy baby girl, but as the days went by, my mother... Read more

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Pictures & Stories from Heart Kids

Heart Stopper Challenge 2012

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