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.
Testing isn't advanced enough for that to be a possibility.
It seems to me that it should be based on need rather than cause.
It would be great if doctors had more understanding towards parents.
Join groups, ask questions and ask for help.
We like to focus on what Evie can do, rather than what she can't.
I have hope because I know I’m not alone and that people do care.
As we discover what her normal is, the medical teams are also learning.
His sense of humour is intact, his zest for life still strong.
Would it have made any difference all those years ago if I had known?
Not having a diagnosis means Olivia is not put in a box.
In a weird way it also opened my eyes to all the positives in my life.
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 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.