Meet some of the 400,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.
We all just assumed that NZ would follow suit and were devastated when PHARMAC decided to defer their decision.
DNA testing can’t match my strain and testing isn’t advanced enough for that to be a possibility in my lifetime.
What would be great is if doctors had more understanding towards parents.
I would love to see this inequality changed as it seems to me that it should be based on need rather than cause.
I have some amazing doctors who make me feel heard and respected, instead of simply being a number or condition.
We like to focus on what Evie can do, rather than what she can't.
Join groups, ask questions and ask for help.
When your child has a rare syndrome, life can get very complicated and lonely.
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?