This is a story about what happens when health workers listen to a child's parents, and what happens when they don't.

'I've found working with families helps a great deal to identify how best to work with a child. They know the child's preferences and how to best communicate with them.'

Check out our latest stories, with links to mainstream disability news and shout-outs to people making the world more inclusive.

A digital avatar with Down syndrome was created with input from 100 young women with the genetic condition in 16 different countries.

'To this day I'm still asking questions and there's no real set answers to a lot of the challenges we encounter.'