Press


The Boston Globe

SOMERVILLE — At 19 months old, Lucas Guo has never crawled, walked, or stood by himself. He babbles but can’t say words. He struggles to chew and swallow. He gets most of his nutrition through a feeding tube attached to his belly.

Lucas has one of the world’s rarest diseases, ZTTK syndrome, a complex neurological disorder caused by a genetic mutation. Scientists have documented only about 60 cases worldwide and estimate that, at most, it afflicts several hundred people — far too few to encourage drug makers to find a treatment.

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STAT

(The Globe’s sister pub devoted to biopharma)

CBS Boston

SOMERVILLE – Nineteen-month-old Lucas Guo, or Lukie, has already had his fair share of challenges in life, but the young boy continues to light up any room with his infectious smile and personality. 

His parents said Lukie was born with a very rare genetic disorder called ZTTK, a neurodevelopmental disease.

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