‘He Was So Pink And Amazing To See’- Melanie on Her Son Jacob

I and Daniel found out at our 20 week scan that our baby had suspected HLHS, PA and TGA we went back and forth fortnightly to check his progress which never really changed. I was induced on 16th April and Jacob was born 05:13am on 17th April 2017 weighing 8lb 9 1/2oz. luckily for us, … Continued

‘I’ve Always Loved Music and Singing’- Charlie Turner

Charlie was born with Hypoplastic Left Heart Syndrome in 2003, but he hasn’t let that stop him from doing what he loves: acting and singing. He made his stage debut in 2013 in Whistle Down the Wind and has since joined the musical theatre group, learning all about singing, dancing and acting. Although he notes … Continued

‘I Get Really Frustrated and Unhappy…Because I Can’t Represent The School’- Hannah’s Story

Hello my name is Hannah and I’m 10 years old and I have a handmade heart. The name of my heart condition is hypoplastic left heart syndrome, which means that only half of my heart works. I was very poorly when I was born and I’ve had three heart operation and three cardiac catheters. I’m … Continued

‘I Know That I Have A Special Handmade Heart’- Tia’s Story

I feel sad about my heart, I want it to get better, I know that I have a special handmade heart and that the doctors did amazing things to make it work and keep me alive. I had two open heart surgeries when I was a baby and was on a life support machine. I … Continued

‘I’m Just Your Typical Lad Or Monkey’- Enzo’s Story

Hello, my name is Enzo and I’m nine years old. I was born with hypoplastic left heart syndrome, also referred to as half a working heart. Here is a little story from me. I’m just your typical lad or monkey as my mum would put it. I enjoy school and science is my favourite subject. … Continued

‘I Am Normal Like All The Other Children But I Am Different Inside’- Pearl’s Story

Hi, my name is Pearl. I am 7 years old and I was born with half a heart. I nearly died when I was a baby but the doctors saved my life. I have had 3 big operations and 1 small one. I can do every sport and play every game as long as I … Continued

‘My Dodgy Heart’- Jago’ Story

Hello.  My name is Jago and I am 7 years old.  I’ve got a bit of a dodgy heart and I’ve been in hospital a few times.  I am going to have a pacemaker next week. Having a poorly heart makes me get very tired.  I will be less tired when I get my pacemaker. … Continued

‘My Mummy Was Told That I Had A Special Heart’- Dillon’s Story

When I was born my Mummy was told that I had a special heart that needed fixing. My Mummy says that I was very poorly and had a big operation on my heart and had to spend the first 10 weeks of my life in hospital. I must have been very brave because I have … Continued

‘Let’s Celebrate Who We Are And Be Happy’- Colbie-Kate’s Story

My name is Colbie-Kate and I was born with Complex Congenital Heart Disease My main Problem With my heart though was Pulmonary Atresia. When I was born they didn’t know I had a heart problem. It was the day after I was born they found out. I was the first child so my parents didn’t … Continued

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    Our Annual Open Day event at The Beeches Hotel and Conference Centre is now at full capacity.

    If you would like to be added to a waiting list for the event, please click the following link and fill out an application form. We'll let you know if a place becomes available as soon as possible - bit.ly/2U5rNmb

    We are also working towards live streaming the event for those who were unable to attend this year.

    Thank you so much to everyone for signing up, we can't wait to see you on Saturday 14th March ❤️
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    Rebecca is one of our wonderful young adult members, she was born with half a heart and recently celebrated her 18th birthday. We hope you had a fantastic day!

    "Can't believe my little girl is 18. She's had a roller coaster 18 years but has overcome everything thrown at her mostly with a smile on her face. She is a beautiful, determined and inspirational young lady who has a heart of gold and a feisty personality. We love you Rebecca 💖"

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    21 hours ago  ·  

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