Picture this: you've just been told your young toddler has a disorder so rare, doctors can't even put a formal diagnosis on it.
That was part of the nightmare Nicola Swan's young boy James had to fight through when he was only three years old.
On Friday a campaign will be launched at Parliament to help the 300,000 New Zealanders living with rare disorders.
Mother Nicola Swan and Rare Disorder NZ chief executive Lisa Foster spoke to The AM Show.
Watch the video.