Only four people in Australia have been diagnosed with rare genetic disease CHOPS

Isla Steed is your fairly typical teenager, according to her mum.

The 14-year-old is "a stubborn little person" who loves technology and food, Kylie Steed says.

And she has a favourite word — "no".

But what sets Isla apart from her peers is something she shares with just 34 other people in the world, and just three others in Australia.

Her condition is so extremely rare, when she was born, it had not even been discovered yet.

It is known by its acronym CHOPS, which stands for its signs and symptoms: cognitive impairment and coarse facial features; heart defects; obesity; pulmonary problems; and short stature and skeletal abnormalities.

The condition was not identified by researchers until 2015.

It would take another four years for Isla to be diagnosed, at the age of eight, with the