'I want her to be here forever, I don't want her to go – especially in the way that she's going to go'

The parents of a girl with a rare disease that causes blindness, paralysis, and a life expectancy of 10 to 12 years without treatment say they are in a phase of "prolonged grief".

Emma Vukic and Max Bridge, both 38, said their nearly four year old daughter Rosie, who is "super lovable and affectionate", developed normally until the age of two, when she began to show difficulties with her speech.

Max, a photographer and director, and Emma, a freelance producer, kept watch over their only child but in September 2024, Rosie suffered her first seizure. Since then, they said she has endured around 3,000 seizures which differ in intensity.

The couple were advised to try gene testing, and the findings in August disclosed that Rosie has a rare, degenerative genetic disorder called Batten dise