Livvy's story

Livvy

"This September I’m going to university to study drama. It may not sound much but it means the world to me after the year I’ve had.

"I found out I had a hole in my heart and then I had to have open heart surgery to fix it."

"It all started when my older brother, Lewis, started feeling ill and getting palpitations. He was diagnosed with a hole in his heart, and because our dad had the same thing, doctors said my other brother, Perry, and I should both be checked.

"It turned out we all had the same problem. It was a bit of a bombshell for our family. Within six months all three of us have had to have operations on our hearts.

"I only told my best friend, my sixth form teacher and my school dean about my heart problem. I’m not someone to make a fuss and I didn’t want anyone else to know what I was going through.

"I felt fine physically, but psychologically I wanted it fixed as soon as possible.

"The mental aspect had a much bigger effect on me. I was in the middle of my A-levels when all this happened, and like all students I was worried about my exams. But having to have surgery during exam season – I found that the hardest part.

"Seven weeks after my operation I saw the surgeon and he said: ‘You can go out and live your life. You can do anything now.’

"I really want to go to university. I'm looking forward to everything about it. Now I want to use every opportunity I get, and I feel university is the place to start.”

Our research into congenital heart disease

Conditions like Livvy’s are what we call congenital heart disease – a heart condition or defect that develops in the womb, before a baby is born.

In the 1950s around eight out of ten babies with a complex congenital heart condition died before their first birthday. Today in the UK, thanks to research, eight out of ten babies born with congenital conditions grow up to be adults.  

We’re funding several projects which hope to further improve the diagnosis and treatment of conditions like these.

A genetic roadmap

Professor David Book and his team at University of Nottingham are one group of researchers we’re funding.

They are building a genetic roadmap for congenital heart disease.

They’re working with other researchers around the country and using state-of-the-art genetic techniques to look for thousands of important new gene alterations by deciphering the DNA code of families who are affected by congenital heart disease. 

A better understanding of the genetics will help us develop more effective ways of diagnosing and treating conditions like Livvy’s.

Help us to support more projects like this by donating, taking part in one of our events or giving unwanted clothes to our shops.

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