Beloved Woonona girl Chloe Saxby has died after a long battle with the rare, terminal Vanishing White Matter Disease.
The 12-year-old passed away 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 family made the announcement in a Facebook post on Tuesday morning. It reads:
We know that she touched the hearts of thousands of people in her local community and around the world, with a smile that lit up the room, with so much love to give. Chloe got such joy and felt so much love from you all. She leaves behind a little piece of her heart with everyone that she touched and we know she will never be forgotten.
Our Chlo fought very hard to the end, but unfortunately the Vanishing White Matter disease was just too much for her. The last 6 weeks have been extremely painful for her and we are relieved that she is not suffering any more.
We are comforted by the fact that she is no longer bound by her earthly shackles and is now dancing and running freely, doing all the wonderful things that were taken away from her.
We can't tell you how devastated we are and how much we are going to miss our beautiful Chlo Chlo.
Thank you so much for all of your thoughts, prayers and messages.
Ny, Grant & Mads just need a little time to process what has happened as we are still in shock.
We will communicate again soon, once we have time to grieve a little and think of the next steps.
Love to you all and thanks for wrapping our girl in so much love over the years.
Chloe, enjoy your angel wings and fly high our darling. We love you xoxo
There's no cure or treatment for the degenerative brain disease, but Chloe's parents did everything in their power to change that, working tirelessly for more than seven years to raise millions of dollars for research.
Their Saving Chloe Saxby campaign mobilised a region with fundraising events including the Great Illawarra Walk, Rhythm for Rainbows and more.