Max and Mila were misdiagnosed in 2009, but in 2015 under a new team of physicians a precise diagnosis of Morquio A was confirmed within the week. It is a double edged sword as this misdiagnosis prevented them from being included in clinical trials in NSW. We cannot ignore what seems like an inequitable assessment of orphan drugs and the sadness lies in that Australia lacks a Rare Disease Policy enabling drugs like Vimizim to fall through the cracks. What's in the pipeline for Max and Mila in terms of their health and how long their little bodies can sustain fighting this battle we don't know. PBAC stated in their outcome that they were not certain of a survival gain and list adverse effects and reactions to treatment. But most cancer patients would tell you that they too are not certain of survival gain and adverse reactions to cancer treatments are common. They are a life, they have a beating heart and they are worth treating. Thereto Max and Mila are two innocent little lives that are worth treating. PBAC is uncertain about survival gain but who are they to measure life in length? Life is not about length it is about quality and Vimizim improves Quality of Life. Please see media coverage to date on this heart wrenching story: http://tenplay.com.au/channel-ten/the-project/top-stories-april-2016/statements-regarding-access-to-vimizim-for-the-horders http://www.mamamia.com.au/max-and-mila-horder/