A Face for Picasso: Coming of Age with Crouzon Syndrome-Ariel Henley

$18.99

At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome — a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement.

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Description

At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome — a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement.