A Change Was Needed
In 2017 we brought home to Gladstone our second child, a daughter who had been born with a complex undiagnosed genetic condition, otherwise known as a syndrome without a name (SWAN).
While there was so little the doctors could tell us, one thing we knew was that our daughter had a life-limiting condition that had flung us deep into the world of disability and support. Six months after arriving home, our first NDIS package was approved, with the promise of the support our daughter needed to grow and develop to the best of her potential.
After four months of trying to put our NDIS package to good use, we were still unable to find a support service willing to engage with our daughter. We were told that her tracheostomy was too complex to manage, that insurance would not cover the risk, that staff could not be trained for a child so medically complex. In other cases, our calls and emails simply went unanswered.
Kirstie and Florence. This is the support four months of phone calls couldn’t find — so we built it.









