Rare is Everywhere: Stories project
Meet some of the 377,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.
I want things to be much better than they were when I was diagnosed.
I grew up a normal kid so it is very frustrating for me now.
I wasn’t disappointed, I was lost and had no idea what all this meant.
William is my superhero – 11p14.3 or not he’s a true blessing.
We are still fighting. We won’t take no for an answer.
Almost every day Gabrielle amazes us with what she can do.