Did you know in Australia there is currently very limited, if any, information, support, treatment and research for rare lung diseases in children? This means, children diagnosed with a rare lung disease and their parents are left feeling isolated, helpless and riddled with uncertainty and despair for the future.
This experience is all too real for Liz and her three year old daughter Charli. In 2014 at only 12 months of age, Charli was diagnosed with a very rare lung disease and as yet the doctors have not been able to provide her parents with a clear treatment plan or prognosis. Charli’s lung disease has a huge impact on her, her family and the health care system.
This bright and bubbly ballet enthusiast is burdened with an oxygen tank 24/7, and the lack of information and support available for her condition has seen her parents endure additional heart ache that could have been avoided if the proper support framework were in place.
Read Charli’s story here and see first hand just how difficult and isolating it is for Australian families living with a child who has lung disease.
With your support, we can change this.
Lung Foundation Australia is working nationally with researchers, clinicians and affected families to establish a network of support. We are actively advocating for children like Charli and the need for research. We are dedicated to improving the health outcomes for these children through our Young Lungs Program.
With your donation, our Young Lungs Program will provide a dedicated support service with information, advice, advocacy and resources that will help parents through the common issues they face when their child is living with a rare lung disease. The program will focus on connecting and supporting Australian families, and providing access to clinical support, research and education.