What We Do

• Practical Support

  The challenges of caring for a child suffering from a life-threatening condition are constant, varied and at times quite overwhelming. Once an affected family has registered here our aim is to provide immediate emotional support as we begin to assess the practical life support needs of the family and where necessary to provide scheduled financial support that may last anywhere from 3 months to 2 years or more. We also aim to educate extended families, employers and schools so that they are adequately informed and prepared to perform their supporting role, which can and does dramatically effect outcomes. Each family may also be provided with communication resources including a dedicated blog such as this to ease the burden of keeping extended family members and friends informed of developments, which can be both time-consuming and costly.

• Advocacy

  We aim to influence government policy in areas that are particularly relevant to the well-being of families where a child is suffering from a terminal or life-threatening illness over a lengthy period of time. Government policy doesn't presently recognise the severity of the impact that this situation can and does have on working families. The financial impact that many have to endure is not obvious to most observers, much less policy-makers. These families deserve the right to retain their dignity in the face of such challenging circumstances, which doesn't necessarily mean financial hand-outs, because this can be achieved simply by providing them with entirely reasonable levels of protection from unreasonable employers and financial institutions as well as other aggressive creditors. We are pressing for new regulations in this area.

• Etiological Research

  Very little is actually known about the specific causes of many life-threatening disorders in children. There are many theories and suspects, as well as clinical curative studies focused on understanding the chemical, biological and physiological dynamics that trigger many of these types of conditions. However, there is a significant lack of research focused on gaining meaningful insights into the relationship between these illnesses and our natural environments, including household chemicals and food additives, etc.. We are establishing a database of lifestyle profiles of affected families, which will substantially enhance current knowledge of how these factors are influencing the health of our children so that the origin of some of these conditions can finally be explained and so that more effective steps can be taken to prevent chidlren from developing these conditions.