Chloe Saxby dies after brave battle with rare brain disease

Chloe Saxby dies after brave battle with rare brain disease
Chloe Saxby, the young New South Wales girl whose battle to find a cure for an extremely rare brain disease touched the lives of thousands around the world, has died.
Chloe, who lived with Vanishing White Matter Disease from the age of three, passed away peacefully in the arms of her parents late yesterday. She was just 12.
"We are devastated to share with you that our gorgeous Chloe passed away peacefully last night in our arms," Chloe's family said in a statement on Facebook.
"She was surrounded by her family in the beautiful fairy garden at Sydney Children's Hospital.
Chloe Saxby with her mother Nyree. (Facebook)
"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."
Her family said Chloe, from Woonona, near Wollongong, 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 family said in a statement.
In 2016, Chloe and her family appeared on A Current Affair in the hope of finding a cure for her rare condition.
She is only one of seven people in Australia battling the disease and 200 in the rest of the world.
The card Chloe Saxby made for ACA reporter Simon Bouda.
Her family said the last six weeks had been extremely painful for the young child, and they took relief that she no longer suffered.
"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," the family said.
"We can't tell you how devastated we are and how much we are going to miss our beautiful Chlo Chlo."
The family said Chloe took a turn for the worse earlier this week where she was stuck in a seizure for six hours that the doctors couldn't relief her from.
"Her temperature then spiralled for much of the night which as you know can be devastating for her," they said.
Chloe Saxby was diagnosed with Vanishing White Matter Disease at age three. (Supplied)
"She has been in so much pain and fighting so hard the last few weeks that it has taken its toll on her little body."
She had been in a private room in the hospital ICU with family members laying with her.
In a post from last week, the family said Chloe had recently undergone spinal surgery for scoliosis.
"Chloe's really struggling at the moment in herself. It's hard work to get smiles from her as she's in constant pain," the post, dated November 14, said.
"It's a pain that is just not ending for her any second of the day.
"With VWM disease, our kids have heightened senses, so you can only imagine what it's like for Chlo at the moment."
Chloe at the Sydney Children's Hospital Christmas party in 2014. (Facebook)
As well as detailing the extreme circumstances for their loved one, the family also revealed Chloe almost lost her health battle last month.
However, the quick-thinking actions from ICU staff at Sydney Children's Hospital saved her, including a doctor who "jumped on the head of Chloe's bed and kept her breathing".
In today's Facebook post, Chloe's family thanked their well-wishers and said they will take time away from the page to grieve.