Who We Are
HeartKids is a support group for families of children with heart disease, be it congenital (born with) or acquired. We started as voluntary group of parents and individuals dealing with and concerned about the day to day realities of raising and caring for children with cardiac conditions, and sometimes dealing with the loss of a child due to their congenital heart defect. We have grown to an organisation of some strength, with 3 part time employees in WA and a presence in almost every state of Australia, as well as a National body – HeartKids Australia.
Our members wish to offer their support to other families who are in crisis, providing opportunities to share common anxieties and challenges. We arrange, where possible, to meet with other families affected by the impact of life with a child with a cardiac condition and to create a ‘network of support’ for all families.
Over the years, HeartKids WA, with the help of members, sponsors and friends, has been able to help out the Princess Margaret Hospital by way of donations of money, equipment and research grants.
HeartKids has several regional representatives who offer their time to arrange coffee mornings and special activities in order to support families with a child with CHD. Telephone support is also offered. Our aim in this area is to ensure that parents aren’t struggling alone.
HeartKids’ produce a seasonal newsletter “Heart to Heart” which updates and informs our members on patient progress; special ‘heart family’ activities; government policy information of relevant, upcoming events and much much more. HeartKids News keeps our geographically diverse membership aware and ‘close’.
HeartKids can assist with information about your hospital stay, for example information on available accommodation, meals, and transport and parking and in some cases can assist families financially in these areas. We can also assist with information on the availability of certain hospital services such as social workers, occupational therapists, and speech pathologists.
Most valuable to our families during the crucial time of surgery are our Family Support coordinators. At Princess Margaret Hospital we have our Family Support Coordinator – Belinda Frank, assisted by Maree Green. Both coordinators are ‘heart mums’ and understand more than most what families are experiencing during the often tension filled hospital stays.
As well as offering support to families, HeartKids aims to increase awareness in the general community and corporate sector about the high incidence of congenital heart defects and its ongoing consequences.