”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

Andrew Kerry – Transition

I still feel like a child. I’m not ready to accept that in 4 months I will have to leave university, find an adult job, get an adult house and do boring adult things like pay bills and watch period dramas on Channel 4. I recently turned the grand old age of 21 which means … Continued

Sophie ( 20, HLHS )

This week is Mental Health Awareness Week, a cause very close to my heart- well, half of it….😉 My name is Sophie, I am twenty years old and was born with half a working heart (Hypoplastic Left Heart Syndrome). However, two and a half years ago, I was also diagnosed with Anxiety. “However, two and … Continued

Thomas (13, HLHS)

Hello, I’m Thomas. I’m 13 years old and I have Hypoplastic Left Heart Syndrome. Here’s my story about my life so far. Fenestration Frustration They knew about my heart condition before I was born so I was transported by ambulance to Birmingham Children’s Hospital. I had my first open heart surgery, the Norwood procedure, when … Continued

Chloe (19, Sibling)

Hello, my name is Chloe and I have a little sister called Ella who has Hypoplastic Left Heart Syndrome; I am seventeen years old and Ella is ten years old. Through the years I have learnt about what the person with the condition is like and read about what they go through, but I have … Continued

‘I Look Forward To What Could Be In The Future’- Evie’s Story

I was born on the 24th of October in 1996 with Hypoplastic Left Heart Syndrome.I had my first operation at 4 days old, then at 6 months old and my last (so far) at 3 years old. From what I can remember which is not much at all, my operations went well and I would … Continued

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