Brave children address House of Lords event about living their lives with just half a working heart

Seven children, all born with half a working heart, kicked off a countrywide awareness campaign to help others living with the same condition with a special reception at the House of Lords on Tuesday 14 February.

The event, which coincided with Congenital Heart Defect Awareness Day, was hosted by Little Hearts Matter, the only charity in the UK dedicated to supporting these children and their families. With members from both the House of Lords and House of Commons, as well as representatives from prominent businesses and organisations, the reception centred around the premiere of a special film produced by the children called Half a Heart, Half the Energy. The reception also served to remind those present of the ever-growing number of families who face a diagnosis of this kind each year, and the urgent and much-needed support that Little Hearts Matter provides along their entire half a heart journey.

Half a heart, Half the Energy shines a spotlight on the fact that people born with half a heart literally have half the amount of energy that heart healthy individuals possess. This limited supply has major implications on how they can live day-to-day, and frequently leads to breathlessness, an inability to concentrate for long periods, tiredness and subsequent feelings of being left out due to not being able to participate with others.

Charlie Turner, one of the children who features in the film said: “Making the film was a great experience. It’s always good to catch up with other kids who have hearts like mine, and it was really special to work with them to help raise awareness of what life is like with only half a heart.  I’m especially really looking forward to being able to show the film to teachers at my school.”

Taking inspiration from the Spoon Theory, created by Christine Miserandino, the film uses spoons to demonstrate the reduced energy levels these brave children function with. It outlines the kind of typical day they face and also shows how at the end of some days they simply don’t have enough energy left so find their bodies borrow from the next day’s energy supply. Something that then creates a domino effect on their day-to-day capabilities.

Suzie Hutchinson, Chief Executive of the charity, said: “This is an important film, created by seven of our youth membership .We are delighted that they have used their voice to raise awareness and to empower their peers. Our young members are best placed for explaining the limitations they face each day, and are equally great advocates of the support that we provide.

“With more and more families finding themselves with this diagnosis each year, our role in helping them has never been more important and we’re hopeful that this new film will not only help more children but also aid us in raising awareness of the charity and the funds it takes to provide our invaluable work.”

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Little Hearts Matter offers a range of services for families, including telephone support and a closed Facebook page where families can connect and share experiences in a safe space. For more information about Little Hearts Matter, visit: www.lhm.org.uk or call: 0121 455 8982.

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