Bryn’s disability and gastrointestinal problems mean that he has been tube-fed since infancy.

For most of his life, the costs of Bryn’s food and feeding system have been covered by the Queensland children’s hospital but, as the process of transitioning him out of paediatric care begins, his mother, Shelley McRae, is worried changes to the NDIS mean she will be left to find an extra $50,000 a year to keep him alive.