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Riley Rose's Story
School Age
“She did not breathe at birth. Now she lights up every room she enters.”
Riley Rose was born in Sydney, Australia, by emergency cesarean. She was not breathing at birth and was rushed to the NICU — a terrifying start that gave way to an extraordinary journey of resilience.
At 17 months, exome sequencing confirmed ZTTK syndrome. By then, her family was already managing sagittal craniosynostosis, polymicrogyria, horseshoe kidneys, hypotonia, and seizures. The diagnosis connected all these dots into one picture.
Today Riley Rose is nonverbal but deeply expressive. She uses a DMO suit, AFOs, a standing frame, and a wheelchair to engage with the world, and she attends a special school where her teachers celebrate her progress every day.
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