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

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

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    Nominations are open for our next Brave Hearts Awards 🏅

    We know that a lot of our young people miss out on awards and trips at school and we feel that they, like every young person should be rewarded for what they learn and how they develop 🙌

    If you know of a young person with a single ventricle heart aged between 8-17 that has achieved and grown, take a look at our list of awards on www.lhm.org.uk/youth-zone/lhm-brave-heart-awards/ 👈

    Nominations will close at the end of January 2020 📅
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    👋 Meet Archie, he is 7 years old and was born with Tricuspid Atresia (TA) a rare congenital heart condition. Archie had his Fontan procedure in September at the University Hospital Southampton, Ocean Ward. The aim of the Fontan procedure is to give a child as much energy as having only half a pumping heart will allow. If surgery has gone to plan the children will gradually recover from the operation and go on to gain far more energy than they had before. He had a longer stay than anticipated, due to a number of complications, but was discharged in October.

    ❤️ “The staff, nurses, doctors, consultants and surgeon were utterly wonderful and we can’t thank them enough. However, it was a consultant anaesthetist, Dr Andy Curry, who stood out in Archie’s mind. His bedside manner, and the relationship of trust that he managed to build up with our very anxious little boy, was astounding to watch. So, on ‘Dress as your Hero Day’ at school, Archie wanted to dress as his hero…”I want to dress as Dr Andy because he helped save my life and he’s my friend”…gulp” – Archie’s mum Charlene.

    😻 We have been blown away by this story. A month after coming home from hospital and Archie is raising a smile, dressing up as his hero and on his way to school. This is one strong boy, as are all of the children in the LHM family.

    🙌 Give this post a share to show your support of Children’s day.

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    University Hospital Southampton NHS Foundation Trust
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    1 day ago  ·  

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