How we started

Our story began in 1994, when we were known as Left Hearts Matter. Left Hearts Matter was set up at the request of parents of children who had a life-threatening diagnosis of Hypoplastic Left Heart Syndrome. We were a volunteer team that offered support to families whose children were sent to the only centre treating this complex condition in the UK, Birmingham Children’s Hospital.

Over the following two years, the charity grew, applying for charitable status in 1996. Other cardiac centres throughout the UK began to offer treatment and the charity’s services expanded to meet the needs of a growing membership. The services included parent-to-parent telephone support, hospital visiting and yearly Information Open Days.

In 1999 we were awarded a Lottery grant to support the further development of our work. This enabled us to expand the charity to meet the needs of a growing national membership. We could now offer telephone support, build a regional network service and offer parents information on many aspects of day-to-day life with a child with complex problems. We produced packs to help parents with disability allowances, and created a special antenatal support service for the 50% of families who had their diagnosis made during pregnancy. We were also able to build on our reputation throughout the specialist paediatric cardiac service around the UK. Eventually clinicians began to make direct referrals to Left Heart Matters.

As the charity became a recognised service, families of other children with complex disorders sought help from us and medical teams began to request further referrals. We could see there was a much broader need for our support and so we consulted our membership, requesting their thoughts on expanding our remit to include all families where a single ventricle condition had been diagnosed. The membership responded with a resounding ‘yes’, stating that they hoped our services could be available to all.

We officially launched our new role in March 2004, changing our name to Little Hearts Matter and offering support to anyone affected by the diagnosis of a single ventricle heart condition.

In 2012 we successfully gained the Information Standard accreditation. This is a Department of Health scheme developed to make sure that members of the public have access to accurate and impartial medical and lifestyle information. It means that our members can be confident when accessing our publications and the information pages on our website.

Today, Little Hearts Matter supports over 3,500 Full Members, with our members coming to us at various points in their half a heart journey.

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