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Chloe Saxby, the young woman from New South Wales whose battle to find a cure for an extremely rare brain disease affected the lives of thousands of people around the world, has died.

Chloe, who lived with Missing White Matter Disease since the age of three, passed away peacefully in her parents’ arms last night. He was only 12 years old.

“We are devastated to share with you that our beautiful 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.
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 was very happy and felt a lot of love from all of you.”

Her family said Chloe, from Woonona, near Wollongong, leaves “a little piece of her heart” with everyone she touched and “we know she will never be forgotten.”

“Our Chlo fought very hard to the end, but unfortunately the Missing White Matter disease was too much for her,” the family said in a statement.

She is just 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.
The card Chloe Saxby made for ACA reporter Simon Bouda. (9NEWS)

Her family said that the last six weeks had been extremely painful for the girl and they were relieved that she was no longer suffering.

“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 from her,” the family said.

“We can’t tell you how devastated we are and how much we will miss our beautiful Chlo Chlo.”

The family said Chloe got worse earlier this week and was trapped in a seizure for six hours from which doctors were unable to relieve her.

“Her temperature then spiraled up for much of the night, which, as you know, can be devastating for her,” they said.

Chloe Saxby was diagnosed with Missing White Matter Disease at age three.
Chloe Saxby was diagnosed with Missing White Matter Disease at age three. (Supplied)

“She has been in so much pain and fighting so hard in recent weeks that it has taken a toll on her little body.”

She had been in a private room in the hospital ICU with family members lying with her.

In a post last week, the family said that Chloe had recently undergone spinal surgery for scoliosis.

“Chloe is really struggling with herself right now. It’s a tough job to get her to smile because she’s in constant pain,” read the post, dated November 14.

“It is a pain that does not end for her in any second of the day.

“With VWM disease, our kids have heightened senses, so you can only imagine what it’s like for Chlo right now.”

Chloe at the Sydney Children's Hospital Christmas party in 2014.
Chloe at the Sydney Children’s Hospital Christmas party in 2014. (Facebook)

In addition to detailing the dire circumstances of their loved one, the family also revealed that Chloe almost lost her battle for health last month.

However, the quick-thinking actions of Sydney Children’s Hospital ICU staff saved her, including a doctor who “jumped onto Chloe’s headboard and held her breath.”

In today’s Facebook post, Chloe’s family thanked her supporters and said they will take time off the page to mourn.

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