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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.
My mother and I both have rare diseases and have vastly different experiences in dealing with the health system.
I went home and researched and came upon the Tatton Brown Rahman Syndrome group on Facebook - I knew instantly this is what Flynn has.
If there had been a framework for his rare condition, the experience would have been very different.
I want to raise awareness in New Zealand as not many specialists have even heard of it.
We handle each health, education and social ‘portfolio’ separately. We tell her story again and again and again.
There are no rules. You can go without symptoms for years, then it can take you out in a matter of hours.
Travelling this journey of rare disorders is isolating, exhausting, frustrating and it feels like there is no equality.
His parting words to me were that I "would be in a wheelchair within five years so get used to the idea.”
When I was growing up, I didn’t think of myself as being any different to other children.
I believe we deserve the same respect as anyone else - we shouldn't have to fight to get available treatments funded.