My life with half a working heart – Jason’s Story

We are delighted to introduce you to Jason, one of our young adult members born with a single ventricle heart condition. Jason has very generously shared his story with us to shine a light on life with half a working heart. He also designed these awesome cartoons!  Hi! My name is Jason Wright, I am … Continued

Being A Young Adult With Half A Heart In 2021

Evie is 24 and lives in Cornwall with her partner and French Bulldog. Evie talks of her experiences living as an adult with half a heart during the pandemic and lockdown. During the first lockdown I had to move back home and shield with my Mum. Dad and my brother moved out and my partner … Continued

“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

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    This Black History Month we would love to tell you about Vivien Thomas, a cardiologist who played a crucial role in the development of treatment for children born with Tetralogy of Fallot, also known as Blue Baby Syndrome, and other conditions. Thomas pioneered an operation now known as the Blalock-Thomas-Taussig shunt. At the time, Thomas was disregarded because of racism and prejudice against his lack of an academic background, sadly it was not until the 1980’s that the procedure included his name. The procedure is still used to this day and has helped many of our members. Join us to celebrate this amazing man. ... See MoreSee Less

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    Have you got a birthday coming up? With this link, you can easily create a Birthday fundraiser for Little Hearts Matter www.facebook.com/littleheartsmatter/fundraisersA simple way to support LHM ❤ ... See MoreSee Less

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