Little Hearts Matter, the only charity in the UK & Ireland dedicated to supporting and empowering anyone affected by the diagnosis of a single ventricle heart condition (or half a heart), has announced a major new awareness campaign to promote the life-changing work they undertake every day, as part of its 30th Anniversary in 2024.
Based in the Midlands, but working across the UK, Little Hearts Matter’s support often starts at the point of diagnosis, where parents receive the devastating news that their unborn child has an incurable, life-limiting heart condition, and follows them through every step of their half a heart journey. This includes their first heart operation at just a few days old, into life at home and beyond.
Since its inception in 1994, Little Hearts Matter has played a crucial role in advocating for awareness, providing resources and offering a supportive community for individuals and families affected by this condition – and this is what they hope the 30th Anniversary awareness campaign will further promote.
Newly-appointed CEO, Lisa Davies, comments:
“We’re incredibly proud to announce the 30th anniversary of Little Hearts Matter and using this milestone to not only promote our work, but also tell the stories of some of our most incredible members.”
She continues: “When the charity first launched in the nineties, the diagnosis of a single ventricle heart condition was a bleak one. Since then, technology and knowledge of the condition has progressed immeasurably and whilst diagnosis today still signals an exceedingly difficult path ahead, there is support and hope. And it this hope we want to share through our stories.”
Two such stories are Hannah Palmer and Jordan Parnell, who both live with the single ventricle heart condition – more commonly known as ‘half a heart’ – and, against the odds, will also turn thirty this year – a feat never thought possible when the charity first launched.
Hannah is currently studying towards a Forensic Psychology degree and is also one of the Trustees at Little Hearts Matter.
Diagnosed with an incredibly rare form of the condition, she was born without her right ventricle (it’s more common for those affected to be born without their left ventricle) and her parents were originally told that it was unlikely Hannah would live past the age of fifteen.
Now on the cusp of celebrating double that age and turning thirty later this year, Hannah, who is based in Newport, Wales, is incredibly grateful for the role Little Hearts Matter has played throughout her life – both for her and her family.
“Although my parents were aware of LHM when I was first diagnosed, it wasn’t until I had my Fontan surgery when I was nine, that we properly connected with the charity and I’ve never looked back.”
She adds: “To finally meet people who were like me and going through the same challenges at the same age, was amazing. We’ve supported each other through our teenage years and moving into adulthood, sending messages when people have been in hospital and providing a shoulder to cry on when needed. It’s just really nice to know we’re not on our own."
“I honestly wouldn’t be who I am today without Little Hearts Matter. The charity, and the people I’ve met through them, have changed my life.”
Jordan is Managing Director at CV Technical in Hinckley, Leicestershire, and was diagnosed with hypoplastic left heart syndrome at birth.
“Little Hearts Matter has been there for me and my family throughout my entire life. It had obviously just started when I was born, but was a hugely invaluable source of support from the moment of my diagnosis and continues to be today. So much so, that CV Technical has nominated them as our main charity beneficiary for 2024.”
To find out more about Little Hearts Matter and the work they do, please visit here.