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Little Hearts Matter was originally set up in 1994 at the request of parents of children who had a life threatening diagnosis of Hypoplastic Left Heart Syndrome. Known initially as Left Heart Matters, a volunteer team attempted to offer support to families whose children were sent to the only centre treating this complex condition in the UK, Birmingham Children’s Hospital. Parents felt very isolated by their children’s disease, the experimental nature of the surgery, the distances that they had to travel for treatment and the huge mortality rate that was the risk of treatment. Gradually, 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.
At this time the charity was run purely by volunteers, but in 1999 the Trustees applied for and were awarded a Lottery grant to support the further development of the charity’s work. This enabled us to move the work of Little Hearts Matter forward very swiftly. We could now offer telephone support, build a regional network service and we could offer parents information on 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 also developed a website and found that many families from abroad began to seek services through the worldwide web, as well as looking at services that involved the children themselves. 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 Little Hearts Matter.
There are approximately 200 children diagnosed with Hypoplastic Left Heart Syndrome each year, but there are a further 400 diagnosed with other single ventricle conditions. As Left Heart Matters became a recognised service, families of other children with complex disorders sought help from the charity and medical teams began to request further referrals. The Left Heart Matters team wrote out to the membership requesting their thoughts on expanding the charity’s remit to include all families where a single ventricle condition has been diagnosed. They responded with a resounding yes, stating that they hoped our services could be available to all. Little Hearts Matter gained its new charity status late in 2003 and officially launched its new role in March 2004.
Over the past few years the charity has grown and grown. We now receive up to six new referrals each week and offer a variety of support and information to members spread throughout the UK.
Membership of Little Hearts Matter
Full membership of Little Hearts Matter is open to anyone with a single ventricle heart condition, as well as their parents, grandparents, legal guardians and siblings. Members must be at least 18 years old and must be British residents or citizens. Anyone who meets these criteria qualifies for full membership which is free.
All full members have a vote at our Annual General Meeting (AGM), and are entitled to have a say in the running of the charity. We will keep your information on our database and will keep you informed of important information regarding the charity including details of our AGM, as well as sending out regular communications on topics of interest, such as events, activities and information updates.
Child Membership will automatically be given to children with single ventricle heart conditions and their siblings under 18 when their parents or guardians join the charity as Full Members. Associate Membership is open to anyone who has an interest in supporting the work of Little Hearts Matter, including our professional colleagues.