Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.
It has not stopped us ensuring that Logan's life is one crammed full of amazing experiences.
I've asked myself since if it would it have made any difference all those years ago if I had known?
Not having a diagnosis means that Olivia is not put in a box and her possibilities are endless.
It’s not your situation that determines your mind, but the way that your mind determines your situation.
It's so hard to believe now how small he was and what he's been through.
It is very scary and at times difficult trying to navigate the system.
I want things to be so much better than they were when I was diagnosed.
I wasn’t disappointed, I was lost and had no idea what all this meant.
I grew up a normal kid so it is very frustrating for me now.
From four weeks old we begged for help with Heath.