NSW Paediatric Palliative Care website launch

Last Thursday we were lucky enough to be invited to the NSW Paediatric Palliative Care website launch which was officially launched by The Health Minister Jillian Skinner.


This website is a valuable resource for parents and clinicians. I think it will help break the barriers some families face when first hearing or thinking about palliative care. I know when we were referred we were a bit reluctant, but we were lucky enough to meet a lovely team at Sydney children’s hospital who really care about our daughter and the rest of our family. I know there are families who will get referred and may not have any support or a great image of Palliative care, I think this site will definitely help with that introduction.

We were also interviewed by Prime 7, you can see our interview here https://au.prime7.yahoo.com/n3/news/a/-/national/28261022/website-helps-inspiring-families-video/

And of course I had to get a photo with the Minister for Health 🙂


Through the maze: a MUST have book for special needs resources

I was first handed this book when I had just found out my daughters diagnosis (Cerebral Palsy) and it helped a lot with resources, especially funding, which isn’t always easy to come across. My daughter is almost 6 and I still refer back to it.

Through the Maze covers the stages from diagnosis of a disability or developmental delay in childhood though to adulthood. It is a guide to the services available and a key to understanding the way the service system works. It is written by fellow parents of children with disability who have used many of the services outlined in the book.

NSW link here: http://www.acdnsw.org.au/index.php?option=com_content&view=article&id=122&Itemid=212
VIC link here: http://www.acd.org.au/information/ttm.htm