The rare disease that afflicts Horsley teen Abbie Tippin means she cannot see, sit up, walk, talk or crawl.
As she aged, she outgrew her mobility chair until it pinched and dug at her skin, leaving marks all over her body.
She could only make a bit of a grimace and a differently pitched noise - "ah!" - to show her discomfort, but her family received the message and took to leaving her alone in her bed of an evening, while everyone else was in the lounge room.
'She's got a will. I don't think she wants to go anywhere.'
For all the flame-haired 13-year-old cannot express, Abbie has been a noticeably happier girl since she received a new mobility chair. It is a good fit and is made of memory foam, with no belts or hard parts to dig at her. The $2250 chair was given to Abbie by the KidzWish Foundation, to the delight of her grandmother, Dianne Amey.
"She smiles a lot more now," Mrs Amey said. "She has to be comfortable."
The family had trouble finding funds that would help with Abbie's costly medical needs because her condition, pyruvate dehydrogenase deficiency, is terminal. During a stay at Sydney Children's Hospital, Randwick, late last year, doctors told Abbie's family she probably would not be returning home with them, but somehow she rallied.
"She's got a will," Mrs Amey said. "I don't think she wants to go anywhere."