Six-year-old Sienna’s parents have fought the NDIS every year of her life for funding that keeps her alive

Five times in five years, June and Steve say they have had to appeal against Sienna’s NDIS plans all the way to the administrative review tribunal. Illustration: Victoria Hart/Guardian Design

June’s six-year-old daughter Sienna* is one of the more profoundly disabled people on the national disability insurance scheme.

Sienna has cerebral palsy and a number of comorbidities. She cannot talk, she cannot sit unassisted, she is fed through a tube, she is incontinent. She has two types of lung disease and is on oxygen 24/7.