Here you can read stories from other young people about how life is for them with half a heart. You might be surprised to see how much you have in common with other people!

“I haven’t mastered teaching with half a heart, but each day gets a little easier” Sophie’s Story

If there were a book called “How to Survive Teaching with Half a Working Heart”, I would read it front to back. However, no such book exists (to my knowledge) so, I am taking it one day at a time… My name is Sophie, I am twenty two years old and I was born with … Continued

People don’t really take notice of “invisible” disabilities – Anise’s Story (16)

I was born with a complex congenital heart condition called “Tricuspid Atresia” which basically means that the tricuspid valve in my heart didn’t form. I also had holes in my heart which caused my blood to mix before being pumped to my body (I wasn’t getting enough oxygen). When I was about 6 weeks old … Continued

Imaan’s Story

At her twenty week scan Ferdie received the devastating diagnosis that her daughter had an incurable heart condition. Ferdie is a trained medical clinician and works as a Dentist so she instantly understood the medical jargon and knew how serious her daughter’s condition was. She was give three options; terminate the pregnancy, go to full-term … Continued

Amber’s Story

Amber, 15yrs, has Pulmonary Atresia –  a serious and non-correctable heart condition.  She has undergone a series of open heart surgeries but will never be cured. Amber has struggled at school and has been absent for long periods.  She was recently awarded a ‘Brave Hearts – My Heart Award’ from the charity Little Hearts Matter … Continued

John’s Story

About 18 years ago, Little Hearts Matter changed Anne Marie’s life. At 4 months pregnant, she went to her 22 week scan and received awful news. The doctors confirmed her baby’s heart had not developed properly and he would have a very serious condition known as Hypoplastic Left Heart Syndrome. At that time, the information … Continued

”PGl 2018 was one of my favourite experiences…the three of us had so much I common” – Imaan 13yrs Activity Weekend Story

Hello, My name is Imaan Aziz, thirteen years old, with Hypoplastic Right Heart Condition. PGl 2018 was one of my favourite experiences… we did everything from quadbiking to campfires. I met many amazing, spirited people. People who could really relate to me and understood what I go through. ”People who could really relate to me … Continued

‘I Was Starting To Rely On My Own Body, Not Machines’ – Becky’s Story

15 year old Becky’s  story is a little different because her mother never found out that she had a single ventricle heart condition until she stopped breathing and went blue after birth. After starting Year 3, Becky unfortunately was bulled because of her condition. Year 6’s would call her ‘BLUE LIPS’. This is always upsetting, … Continued

‘I Have A Handmade Heart’- Ben’s Story

Ben would be slightly older now, but when he wrote about his experiences with HLHS, he was only 18. After sailing through his GCSE’s, like many others, A-Levels came as a huge shock to Ben. Realising that he could implement his skills elsewhere, Ben decided to study BTECH Level 3 Health and Social Care. He’s … Continued

‘My Life So Far With Tricuspid Atresia’- Ryan’s Story

Ryan was born in Jun 1997, and was diagnosed with tricuspid atresia, having his first operation at just 3 weeks old. At school, Ryan does recall struggling physically, and notes that he was treated a bit like ‘an egg about to crack at any moment’. But he got along with everyone, despite that being a … Continued

Alex Webb 21 (HLHS) – Walking Challenge

Although I was born with a heart condition (HLHS), I have always thought I was ‘normal’ because I went to a ‘normal’ school, eat ‘normally’, play ‘normally’ and have lived, a ‘normal’ life so far. If you’ve not known anything else, it can be easy to forget that you take medications daily, always have and … Continued

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    A few weeks ago, we shared a news article about John and Kate Carlton who have been fundraising for Little Hearts Matter. This family’s amazing support doesn’t stop there, as their 9 year old daughter May also arranged for her school to take part in a non-uniform day for Little Hearts Matter. She put together a PowerPoint presentation and spoke to her Headteacher who agreed to hold a fundraising day for LHM.

    Just look at how many donations were received on the day – well done May, you’re a star! ❤️ To get involved and register your fundraising, click here: www.lhm.org.uk/get-involved/fundraising/register-your-fundraising/
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    Youth Support

    There are young people living with half a heart across the country, many aged between 11 and 18. It is massively important for all of these brave young people to have access to the care, guidance and support they need – allowing them to live life to its full potential that their heart will allow.

    Lexie runs our Youth Services, supporting our youth members in a variety of ways, throughout their half a heart journey. These young members are invited to Activity Weekends and Education Days where they will explore their heart condition and seek solutions to the challenges that having half a heart brings. They will also have an opportunity to meet with other young members, online and in person, making friendships and helping them feel less alone.

    Did you know our youth members also consist of siblings? We know it can be a tough road for them too, so they also have a chance to chat with each other for support from people their age that truly understand. You can find out more about our Youth Services by clicking here www.lhm.org.uk/youth-zone/
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