By
Marissa Nasiatka

Our Interview with Magda and Nathaniel Newman

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Magda and Nathaniel Newman

Nathaniel Newman is a seventeen year old student at Skyline High School in Sammamish, WA. He is learning to drive, loves to hang out with his four dogs, play video games with his friends, read comic books, and draw. Nathaniel also has Treacher Collins syndrome, which is a congenital disorder that causes underdeveloped bones in the face and jaw cause sloped eyes, missing or malformed ears and block airways. In the first fifteen years of his life, Nathaniel has gone through 65+ surgeries, but none of them have been to change his appearance. Each surgery was only to improve his physical health. Nathaniel has been featured on national television and in multiple publications, to talk about his condition and the challenges that come with it.

Nathaniel is often referred to as, “the kid who inspired the character of Auggie Pullman in the book Wonder" though actually he and his family met author R.J. Palacio after the book was published. Nonetheless, Palacio felt that Nathaniel represented the character who she was trying to create in the book perfectly. Inspired by their relationship with Palacio, Nathaniel and his mother Magda have authored joint memoirs on the topic of growing up and raising a child with Treacher Collins syndrome; these memoirs are entitled, Normal: A Mother and Her Beautiful Son for adults, and Normal: One Kid’s Extraordinary Journey for younger readers. Magda says, “Our goal in writing these memoirs was to go beyond what was told in ‘Wonder.’ We wanted to dive deeper into explaining the physical challenges of being born with facial differences and how they impact more than your social interactions.”

Magda’s memoir tells the story about how she and husband, Russel, were not aware of Treacher Collins syndrome. They were told about the condition by a doctor right after his birth. Magda and Russel’s challenge was to simply keep Nathaniel alive in his early days; then Nathaniel had to breathe through a tracheostomy tube and be fed through another tube in his stomach. But, despite the fact that his ears, eyes, cheekbones, and jawline were not properly formed, Nathaniel’s brain and the rest of his body were healthy. The Newman’s, with their new beautiful and happy son, decided that they were not going to shield Nathaniel from the world. They took every opportunity to educate and discuss his difference with the world.When Nathaniel was thirteen, doctors at Seattle Children’s hospital broke every bone in Nathaniel's face. They inserted sixteen screws that over time were used to stretch his bones, just so he could breathe without the use of a tracheal tube. Removing the tracheal tube was a crucial step in providing Nathaniel freedom to engage in activities, such as swimming, that he longed to do with his friends and his younger brother, Jacob.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, the Newman’s shed light on a rare craniofacial condition affecting one in 50,000 newborns. Nathaniel and Magda discuss their journey with Treacher Collins syndrome, and the ins-and-outs of how they inspire and educate others to share their differences with the world. Magda states, "Live your normal. Your life, your experiences, the way you go through your life is yours. And that's your normal."

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