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