ABC Illawarra / By Jessica Clifford
Chloe Saxby lost her battle with vanishing white matter disease on November 18.(Facebook: Saving Chloe Saxby)
Chloe Saxby has been remembered as a "beautiful rainbow warrior" at a memorial attended by hundreds of people in Wollongong.
Key points:
- Chloe Saxby lost her eight-year battle with Vanishing White Matter Disease last week
- She has been remembered as a "rainbow warrior"
- 400 people attended the memorial service in Wollongong, while hundreds watched a live stream at other venues and online
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 Saxby's family requested rainbow outfits and decorations for her funeral in Wollongong today to honour her love of all things colourful.(ABC Illawarra: Sarah Harvey)
"Chloe crept her way into everyone's hearts and stayed there," she said.
"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."
Four hundred mourners were allowed to attend Chloe Saxby's funeral at the Wollongong Town Hall after the family was granted an exemption to COVID-19 regulations by the NSW Government.(ABC Illawarra: Sarah Harvey)
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.
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.
Video https://www.facebook.com/watch/?v=1674903379355740
Video https://m.facebook.com/watch/?v=1674903379355740&_rdr
