3 January 2017 - Little Anna dances around her room, stealing hearts with playful pouts that break into cheeky grins.

A lively almost two-year-old, it's hard to fathom she is expected to die before the age of 37.

The couple had clung on to hope when told during the appointment about new drug Kalydeco - the first to treat the underlying cause for Anna's gene type and stop mucus build-up, not only increasing life expectancy but drastically improving quality of life.

Dubbed a "game-changer", and already on the Pharmaceutical Benefits Scheme for cystic fibrosis sufferers over the age of six, the doctors said it was likely to be made available for two to five-year-olds by Anna's second birthday this February.

American drug company Vertex is understood to want more than $200,000 per person per year for the drug - a price too high for the couple to pay privately.

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