One Family's Story of Hardships, Triumphs With Son Who Has Rare Craniofacial Disorder

One Family's Story of Hardships, Triumphs With Son Who Has Rare Craniofacial Disorder

Russel and Magda Newman’s son, Nathaniel, was diagnosed with Treacher Collins, an extremely rare congenital craniofacial disorder caused by mutations in the POLR1C gene. When Nathaniel was 12 years old, the Newmans met with surgeons at Seattle Children's Hospital and made the difficult decision to have him undergo a radical surgery that had only been performed on one other child with Treacher Collins. The goal of the surgery was to be able to open up Nathaniel’s airway enough to finally remove his trach. For the surgery, Dr. Richard Hopper, the chief surgeon at the hospital’s craniofacial center, had to literally rearrange the bones in Nathaniel’s face.

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