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 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.
William is my superhero - 11p14.3 or not he’s a true blessing.
Almost every day Gabrielle amazes us with what she can do.