When Rosalie Dow moved into transitional housing in Melbourne with her two young children in 2013, she thought it would only be for a few months.

Dow’s son, Mayer, was two, and showing signs of what would soon be diagnosed as Coffin-Lowry syndrome, a rare and often debilitating genetic condition with complications including intellectual disability, seizures, hearing impairment, sensory and behavioural issues, and an inability to walk.