Community rallies for 2-year-old with rare brain disorder

Otago Daily Times

20-05-2025

A signed Highlanders T-shirt, accommodation in Akaroa and a helicopter ride are all up for grabs at the Building Billy's Brain fundraiser at the Scottish Hall in Oamaru on Saturday night.
The quiz and auction night was organised by William "Billy" Casey's family to support ongoing treatment for Billy, 2, who was diagnosed with a severe brain malformation at just 6 days old.
Billy was given only a 50% chance by doctors of making it to his first birthday.
Earlier this year the community got behind Billy and his family and raised $10,000 at a gala day in Weston that helped support them to seek treatment for Billy at a specialised rehabilitation clinic in the Gold Coast.
The therapy Billy needs is no longer covered by government funding in this country following changes last year.
Billy's grandmother, Karen Fraser, said the funds from the event would go towards Billy's ongoing successful treatment in the Gold Coast.
"He needs ongoing therapy forever, as long as Billy's with us, to help him create new neural pathways."
Ms Fraser said they had "huge success" with Trexo Robotics that helped children with neurological conditions with assisted movement, helping Billy's brain to move his legs.
Billy's mother, Hayley Casey, will take her last trip to the Gold Coast at the end of the month with Billy for his next round of treatment.
The family are excited that the rehabilitation clinic, the Centre of Movement, based in Australia, will soon move permanently to locations in New Zealand.
"We're so excited they're coming to Christchurch and Rotorua, it's really amazing, and the price will drop so much," Ms Fraser said.
She said the local support for the fundraiser had been "amazing".
"Jim Hopkins is going to be the quiz master and that will go for an hour and a-half, and then we're going to have an auction.
"We have been so lucky to have had so many beautiful things gifted to us to use as prizes or for auction."
The fundraiser also included live music from popular local band The Heavy Feathers and a supper catered by Pozzabon and two LJ Hooker auctioneers were helping with the auction on the night, along with a silent auction too, she said.
"A signed Highlanders T shirt, accommodation for two in Akaroa for up to 10 people and a helicopter ride for four people was part of some of the very cool donated gifts."
There were other "special" items available.
"My dad, who is nearly 90, Billy's great-grandad, has made these beautiful, gorgeous lead lights. He's been making them professionally for 60 years, so they will be up for auction, too," Ms Fraser said.
They had about 64 people signed up but were hoping for more, she said. The fundraising event is at the Scottish Hall in Oamaru at 6.30pm on Saturday.