Linda Hughes never leaves her son alone in hospital, for fear he might die if he does not get the treatment he deserves.

Jacob is generally hospitalised about once a year, and his mother or another family member always stays with him.

“Jacob’s always got someone who loves him beside him … he probably wouldn’t be here otherwise,” Ms Hughes said.

“I certainly know we’ve saved his life in hospital … just by being there when things are going wrong and Jacob can’t push the buzzer or call out.”