Stephanie de Sousa still remembers the ordinary moments most vividly.
Fish and chips at the pub on Friday night, laughter over crashing the wheelchair, evenings watching MasterChef, Survivor and The Crown.
They were all times spent with her sister, as motor neurone disease slowly stripped away her independence.
Therese died in 2022 after living with the terminal neurodegenerative condition, leaving de Sousa, the former MasterChef contestant-turned-cookbook author and social media sensation, with memories that have settled into "the good times".
"I honestly only really remember the good times now," de Sousa told AAP.
"I have blocked the awful parts out of my mind."
But those awful parts defined the reality of MND: progressive loss of movement, intense care needs and the gradual erosion of independence that affects not only patients but entire families.
