It was the news that thousands of people, across the Illawarra and around the world, have been desperately hoping to prevent - 12-year-old Chloe Saxby has died.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The Woonona girl was diagnosed with a rare terminal illness, vanishing white matter (VWM) disease, eight years ago, and ever since her family have led the search for a cure.
Millions of dollars have been donated to the Chloe Saxby Foundation, with schools and community groups holding events and fundraisers.
Tragically, Chloe passed away this week in the arms of her parents, Nyree and Grant Saxby, surrounded by her family in the "beautiful fairy garden" of Sydney Children's Hospital.
Her legacy will be that her family and the community raised enough money to start funding Australia's first dedicated medical research into VWM, at the Illawarra Health & Medical Research Institute (IHMRI) at UOW.
IHMRI's chief operating officer Kara Lamond said staff at the Illawarra Health & Medical Research Institute vowed to continue the search for "her and other children fighting this worldwide".
"We had the pleasure of knowing Chloe and working alongside her family, Nyree, Grant and Mads, to help find a cure for this horrible and rare disease," she said.
"Chloe will forever hold a place in our hearts at IHMRI, and we will continue to research Vanishing White Matter Disease that she and other children have been fighting worldwide."
"We thank Nyree and Grant for their continued support and commitment to our research and hope that one day this disease will be cured. Our thoughts are with Chloe's family and friends at this time."
Aster Group chief executive Daniel Munk had hosted events at Wests Illawarra that had helped the Saxbys and other families supported by the Disability Trust.
"On behalf of the Wests Illawarra board of directors and the entire team, our deepest condolences go out to Nyree and Grant and their beautiful family," he said.
"We are deeply saddened by the news of their precious daughter Chloe passing away. We are incredibly grateful to have met Chloe and the Saxby family through our relationship with the Disability Trust. Their courage on this journey inspired many and Chloe will be so deeply missed."
Chloe experienced pain and suffering that no one, especially a child should have to endure. But despite this she always tried hard to put on one of her beautiful smiles.
The Disability Trust's Michael Norris said Chloe participated in the Sport and Recreation Mischief Makers drama program and everyone who knew her was deeply saddened to hear Wednesday's news.
"Chloe was a valued member of our Mischief Makers drama program for many years and received the participant of the year award just over 12 months ago at the Novotel," he said.
Illawarra politicians were among those quick to respond to the news and express their condolences.
Federal Member for Cunningham Sharon Bird said she was devastated to hear the news.
"We all send our love and support to Chloe's beautiful family and very, very many friends," she said.
"Through all her battles Chloe's smiling face and sparkly nature have been an inspiration to us all to do so much more in the battle against VWM and rare diseases. She leaves an amazing legacy and impact on us all."
Federal Member for Whitlam Stephen Jones said Chloe's fight emphasised how important it was to push forward and support medical research.
'I am so sad to hear of Chloe's passing. My sincerest condolences to Chloe's family who have fought so hard for her," he said.
"We need to renew our efforts to find cures for rare diseases like vanishing white matter disease. The effort to find a COVID vaccine shows it can be done.
Member for Wollongong Paul Scully said Chloe showed a level of strength and determination far beyond her years and did so with an ever-present smile.
"She will be missed but not forgotten. My thoughts are with Nyree and her family," he said.
Member for Keira Ryan Park said the Illawarra community had lost an angel.
"We are all so deeply upset about losing little Chloe. I have never met a braver little person in my life. Chloe experienced pain and suffering that no one, especially a child, should have to endure. But despite this she always tried hard to put on one of her beautiful smiles," Mr Park said.
"Chloe was not with us for long but her impact will be felt forever. She was loved so much by her family, her friends and an entire community.
"Each of us who got to know her are better people because of it. She inspired all of us to be courageous in the face of adversity and she showed us all what fighting spirit really looked like.
"We will miss her so very much, but will always know that when we see one of those beautiful rainbows crossing our sky, that she is never far away from her community, one who loved her so very much."
Hundreds of community members took to Facebook on Tuesday to pay tribute to a "beautiful girl".
"Absolutely heartbreaking. Chloe touched so many lives and fought so hard. Rest in peace beautiful girl. Fly high with the Angels," Carla wrote.
"Rest in peace little lady. I had the great pleasure in meeting you Chloe, and will remember you by your beautiful smile. Fly with the angels, no more suffering. To all the family, my condolences to you all," Robert posted.
Sign up for breaking news emails below ...
Greg Ellis
Almost four decades in electronic, print and digital media. A writer, presenter, emcee, photographer and videographer with degrees in business management, marketing and human resources and tertiary qualifications in photography.
Almost four decades in electronic, print and digital media. A writer, presenter, emcee, photographer and videographer with degrees in business management, marketing and human resources and tertiary qualifications in photography.
