"The most important thing that needs to change is for the medical professionals to stop being this institution where we're not allowed to have equal say. Because of the terminology. Because of some of the phrases they use. It's very easy to understand what the issue is, especially when it concerns your own child, to switch on this extra brain of yours. And you're actually more clued up than some of the professors they have at the hospital. They need to acknowledge that we're not just parents, we're not a different entity. We have to work together."