Imagine being told your child has the most complex of all heart conditions and that they can never be cured. Imagine then being expected to make treatment decisions with no real understanding of what the future might bring.
Hearing and then understanding all the information you have been given by hospital teams is frightening and often baffling because many people have never heard of single ventricle hearts or their treatments; let alone the challenges that living every day with half a heart can bring.
It is not surprising that families are left feeling very alone, frightened and confused and floundering until they receive help.
That is why Little Hearts Matter exists.
Little Hearts Matter wraps a blanket of understanding and care around families at every rollercoaster stage of their half a heart journey.
The charity team offer a mixture of personal support and easily understood information to help reduce families’ stress and improve their understanding. We also link young members, parents, grandparents and families. There is really nothing better than being able to reach out to other families walking the same path as you, especially when that journey is stressful and strewn with life changing challenges.
Every service we offer is free of charge because when a family seek our support they are at their lowest ebb and most vulnerable. In an ideal world, perhaps we shouldn’t need to exist, but every day we see the holes in the support and information available so we work to fill those holes and make each family’s journey just that little bit easier.
We are the only charity in the UK offering this highly specialised help. And our assistance is needed more now than ever.
This year, and every year, as many as 600 families in the UK will learn that their child has only half a working heart. You can see our urgent need to expand and develop services to meet their desperate plea for support.
Little Hearts Matter provides up to date, expert, medical and lifestyle information that is well supported and respected by a national medical network. Referrals into the charity’s services come from many clinicians, at all stages of a family’s journey often starting at the time of their initial diagnosis.
Our Vision is to see families able to cope with the diagnosis, treatment and lifestyle challenges that single ventricle heart disease creates and to help them feel less stressed and alone as they travel their half a heart journey.
Our immediate goals are:
- To raise the profile of the charity so that every family seeking help can find us.
- To expand the support and information available for young members as they learn to live an independent life with half a heart.
- To develop mental health services for parents, children and young adults struggling to make sense of the life they have.
- To raise a greater awareness of the needs of our members in arenas for change.
- Ultimately to build LHM house where families can seek refuge and support. A place where young members can visit and feel safe in the knowledge that they are not alone.
Why do we need your support?
We know every family as individuals. Our small team work closely with every family seeking our help. We watch the children grow and hug families when they die.
We see them change when they find our help, the support they gain when they find they are not alone, their empowerment when they have a greater understanding and their relief when they gain the benefits that they need to live every day.
Your help will directly impact individual families.
Whether it is funding our much needed telephone support line or hugely valuable ‘lifeline’ social media groups, sponsoring the booklets that explain the next challenging treatment, providing the money that helps young people with half a heart learn how to deal with being different from their friends, or supporting the memorial care offered to families who lose a child along their journey; your help will help others when they need it most.
We need £400,000 annually to offer each of the services we currently provide to all the children and families who reach out to us.
Increasingly, we are being asked to provide further support, particularly in the areas of children’s mental health and wellbeing and our innovative energy project.
With your help we will be able to grow and fulfil our promise to ensure that no family remains alone in darkness. Please help in any way you can. Get in touch with us to learn more.