March is Rare Disorder Month and national advocacy organisation Rare Disorders NZ is encouraging people to "glow up and show up"— sharing their support for the estimated 300,000 New Zealanders living with a rare disorder.
George’s mother, Sophie Young, said when he was diagnosed at six weeks old, the family — which includes father Stu and older brother Freddie, 3 — had received a lot of support from Rare Disorders NZ.
"We’ve got a lot of great help from them, so we thought it was important to raise awareness for it," she said.
On Wednesday, Goldfields Kindergarten hosted a colour run and barbecue, raising $250 for Rare Disorders NZ.
Mrs Young said the support from the community and the kindergarten was incredible — it was a great way to spend a day.
"There’s only a few of us, there’s just a small rural kindy, so it was really cool to raise that much money."
While the organisation was already close to the community, the family had not known much about it until George’s diagnosis.
"I didn’t really know much about the rare disorders community," Mrs Young said.
It was important people had an understanding of how George and others could be affected by their conditions, she said.
The organisation was advocating for more support in the health system and from the government — encouraging the development of a framework to assist people with rare disorders.
"[But] making sure that people know that it’s not all negative, there’s so many positives that come with that as well," Mrs Young said.
