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Aussie mum’s heartbreak as daughter diagnosed with rare incurable syndrome

Left: a smiling woman holding a joyful toddler in a cozy home; right: a happy child sitting with a doll in a playroom with stuffed animals in the background

A young Australian mother has shared her devastation after learning her daughter has an extremely rare and incurable neurological disorder.

Single mum Celine Baumgarten, who spent the last two years fighting a legal battle against online censorship, revealed on Wednesday her 16-month-old child Ciera was last week diagnosed with Rett syndrome.

The genetic disorder, which is caused by a random mutation and is not passed down from a parent, mainly affects females, causes lifelong intellectual and physical disability, and while it has no cure treatments and therapies can help manage symptoms if started early.

Ms Baumgarten shared the diagnosis in a video on her social media accounts, and told Noticer News: “I’m devastated. This is the most personal struggle I’ve ever faced, but I will never shy away from a challenge. I will do everything in my power to give my precious baby girl a happy life.”

She has started a GoFundMe to raise funds to cover lost income and everyday living costs while she focuses on Ciera’s care, and fund essential therapies as she has no physical support nearby.

“Those who know us in person know that Ciera is my life, and I am wholeheartedly dedicated to her. At the beginning of the year, we fled our previous home due to family and domestic violence, and we have only recently settled into our new life together. To now receive this diagnosis is just world shattering,” she said.

“I am still in shock and trying to process what this means for our future, but one thing is clear — I will fight with everything I have to give her the best possible life.

“Our days are now going to be filled with medical appointments, assessments, early intervention therapies, and learning how to support her changing needs. Rett Syndrome often brings unexpected medical costs, specialised equipment, home modifications, and therapies that aren’t always fully covered by the NDIS.”

The diagnosis comes just months after Ms Baumgarten won a long-running free speech battle against Australia’s eSafety Commissioner over an X post exposing a Melbourne primary school for running a “queer club”.

She first successfully challenged a takedown notice in February last year, only for the controversial unelected bureaucrat to attempt to overturn the ruling in the Federal Court, which ruled there was no error in the Administrative Review Tribunal’s original finding.

Left, right, Celine and Ciera (GoFundMe).

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