Chloe Saxby's family spent a day of quiet reflection on Wednesday, the first anniversary of the bright and bubbly 12-year-old's death.
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"You gave and received more love in your 12 short years than most people experience in a lifetime," mum Nyree Saxby said.
"To every person who gave our Chloe your friendship, love and support over her short life, we thank you for embracing our girl."
The beloved Woonona girl was dianosed with vanishing white matter disease in 2012.
When Chloe was diagnosed there were only two neurologists in the world searching for a treatment, neither of them in Australia.
Her parents refused to accept the sparse resources available for Chloe and children like her.
They set up the Saving Chloe Saxby Foundation, raising enough money to fund Australia's first dedicated medical research into VWM, at the Illawarra Health & Medical Research Institute at UOW.
Chloe's legacy continues to touch the lives of those in the Illawarra community and further afield, including Mollymook girl Holly Burns, who has also been diagnosed with VWM disease.
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