They Told Me I Had A Perfect Baby | Raising Australia's Only Child With This Rare Condition

Wine with Wita | Speech Pathology & Parenting Support · Sep 24, 2026 · 1h

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Sara Ruggeri was told she had a perfect baby. She knew she didn't.

Her daughter Valentina is the only person in Australia ever reported to have hyaline fibromatosis syndrome. It's an ultra-rare genetic condition with between one and 200 cases recorded worldwide.

But the diagnosis took seven months. Seven months of screaming Sara couldn't explain. Tests that kept coming back clear. Doctors who told her she was overthinking it.

Sara walks us through all of it. A short femur at 32 weeks. A…