When our daughter Viviana was diagnosed with Williams Syndrome, our world changed overnight. Not because she changed — she had always been Viviana — but because suddenly everything made sense. The health concerns, the developmental struggles, the behaviours, the appointments, the feeling that something bigger was going on that nobody seemed to fully connect together. Before her diagnosis, we had never even heard of Williams Syndrome. And honestly, most people still haven’t. T

Understanding Williams Syndrome has been a journey of unlearning a lot of what we thought parenting, development and “normal” were supposed to look like. Before diagnosis, we spent years confused. One minute we were being told not to worry and that Viviana would grow out of things, and the next we were sitting in specialist appointments discussing health concerns, developmental delays and behaviours we couldn’t quite make sense of. It constantly felt like the pieces didn’t fu

Viviana was born with a multitude of health issues and developmental concerns. Despite constantly raising concerns with every health professional we encountered, nothing ever seemed to stick. We saw multiple GPs and two private paediatricians at prominent hospitals in Sydney before she was even 9 months old. After hours of late-night researching in desperation, we even brought up Williams Syndrome ourselves. Despite this, we were repeatedly dismissed. We were informed we were