Chloe Saxby has been remembered as a "beautiful rainbow warrior" at a memorial attended by hundreds of people in Wollongong.
The 12-year-old lost her battle with the rare vanishing white matter (VWM) disease last week, eight years after her diagnosis.
Four hundred people dressed in rainbow-coloured clothing attended the memorial service this morning after the family was granted an exemption from COVID-19 restrictions by the NSW Government.
Hundreds more live-streamed the service from other Illawarra venues and online.
Chloe's mother, Nyree Saxby, described her daughter as someone who lit up the darkest of days.
"Chloe crept her way into everyone's hearts and stayed there," she said.
"Our darling Chloe, you had a smile that lit up the darkest of days and a gorgeous belly laugh that made your beautiful eyes sparkle.
"Even though we were fully aware this day was always a possibility, we're still in complete shock.
"I hope you are dancing free wherever you are somewhere over the rainbow."
Friend Karisha Pinkster said Chloe was the strongest person she had ever met.
"You changed my life for the better," Karisha said.
"Fly freely beautiful girl, I love you, and I'm going to miss you so much."
Chloe's uncle, Gary Laurie, told the memorial service he would miss his niece immensely.
"I take comfort knowing Chloe is free of her early shackles," he said.
"I know she's running free and dancing in heaven."
Her cousins described her as a "beautiful rainbow warrior".
A rare and terminal disease
The Woonona girl was one of only seven known cases of the rare degenerative brain illness in Australia and her family has spent the past eight years raising money for medical research to help find a cure.
VWM disease is a terminal brain disease that mostly affects children, and causes seizures and the loss of motor skills.
The Saxby family raised millions of dollars, which allowed Australia's first dedicated medical research into the disease to be conducted out of Wollongong.
They have vowed to continue trying to find a cure.
