Amelia matters .....
PLEASE NOTE CHANGES FOR COFFEE AND SUPPORT GET TOGETHER
Amelia Matters is an organisation that helps to support children who suffer from Congenital Heart Disease (CHD). By educating and raising awareness we hope to help children living with a CHD and their families.
‘Congenital Heart Disease affects 8 in every 1,000 babies born in the UK, every year. CHD refers to any defect of the heart present from birth including structural defects, congenital arrhythmias and cardiomyopathies. Only a quarter of CHD’s are detected by an ultrasound scan.’
In April 2006 our unborn daughter was diagnosed with a complex and rare heart condition during our routine 20 week foetal scan. After Amelia was born we spent many nights and days in hospital watching her go through two major heart by-pass surgeries. Amelia was born with only half a working heart, her diagnosis is Tricuspid Atresia – HRHS (Hypoplastic Right Heart Syndrome), including three more congenital heart defects. Amelia is one of many children affected by one or more congenital heart defects in the UK. It quickly became clear that there was a lack of support and guidance before, during and after her surgeries. The charity Little Hearts Matter were our only link to help and support, which is why we have set this organisation up to help and support others, including Little Hearts Matter.
Amelia receives her primary care at The University Hospital of Wales Cardiff who informed us that Amelia was having the last warfarin machine from the Children’s Heart Federation and any other parent and child thereon would have to buy one. With this in mind our aim is to fund these machines for families who cannot afford to buy one, we were told they cost £299.
Being parents of a child with CHD, we understand the constraints congenital heart disease can have on a family and affect their day to day lives. By raising money and supporting families we want to help them live a full life, flourish and grow.
5th Birthday 2011