One of the biggest challenges we all face as CF parents is keeping abreast of all the information and research out there. There’s a lot to keep on top of and so many questions to ask. What vitamins should my child be taking? Are we doing the right kind of physio or enough physio for that matter? What happens at other clinics? Are all kids on the same kinds of programs? How do I get my child to eat more or eat better?
We are a group of parents from the Sydney Children’s Hospital and Westmead CF clinics in Sydney Australia who are committed to working in partnership with our hospital CF care team to improve health outcomes for our kids. We also recognise that caring for a child with a chronic illness is a marathon not a sprint, so we’re refocusing the conversation around what can be done in the here and now to improve the health of all of our kids day by day. The aim of this site is to collect as much information as we can and distribute it out for all parents to access whether you live in the city or in regional areas.
Although each child is different, we all face the same kinds of questions as our children move through their CF journey. Likewise we all have the same concerns at different times of the year; when should we have the winter flu shot? how do I determine the difference between a CF cough and a seasonal allergic response? What are the key things to focus on during physio again?
Think of this as your information and inspiration hub; put together by the parents for the parents. And if you’re not from Westmead or Sydney Children’s Hospital but would like to contribute, please do! We’re aiming to link up with parent groups all over the world to share information and build momentum around parents working in true partnership with doctors to improve the health outcomes for every child with CF.