"I've always known I was different," says Nathaniel Newman, who has Treacher Collins syndrome

By Sam Gillette and Michelle Bowers
January 09, 2020 12:13 PM
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Credit: Brandon Hill

Wonder, the film about a fifth-grader with facial differences, captivated the nation when it came out in 2017. Nathaniel Newman, a 15-year-old boy who has the same Treacher Collins syndrome as the main character Auggie, has a story that’s just as compelling. And he has both his mom Magda and the film’s popularity — plus his own indomitable spirit — to thank for the amazing transformations in his life.

Treacher Collins — a congenital disorder in which underdeveloped bones in the face and jaw cause sloped eyes, missing or malformed ears and block airways, but no mental disabilities — wasn’t even on Magda and Russel Newman’s radar when their son was born. (After genetic counseling and prenatal testing, the couple also had son Jacob, now 13.) Nathaniel’s condition would lead to numerous surgeries and near-death moments throughout his young life. Magda details their arduous and inspirational journey together in her new memoir, Normal: A Mother and Her Beautiful Son, and Nathaniel has written his own companion memoir for young readers, Normal: One Kid’s Extraordinary Journey. Both books will publish on Jan. 14.

“I’m not jealous of my brother for having a normal face. Jealous isn’t my style,” says Nathaniel in an exclusive joint interview with his family, which is featured in this week’s issue of PEOPLE. “I’ve always known I was different. As long as I can remember, I just accepted it. I like to think I’m strong.”

Magda had to find her own source of strength when eldest child was born.

“I saw his profile… Something was very wrong,” she says. To Magda’s chagrin, she remembers asking her doctor: “Did I deliver an alien?”

Baby Nathaniel
| Credit: Courtesy Newman Family
Credit: Chris McPherson

For more of Nathaniel’s story, pick up the latest issue with PEOPLE, on stands Friday.

But she quickly fell in love with her baby boy — a love that would sustain her as he faced continual health problems. Nathaniel has gone through nearly 70 surgeries so that he can breathe, hear, swallow, and speak. He’s almost died a few times over the years due to various complications, and for 13 years had to have a stoma that greatly limited his activities (no swimming or showering solo).

“God picked me to raise this child,” explains Magda, who stayed home full-time to take care of Nathaniel. Her husband Russel’s work for insurance companies has been the only way they could begin to pay off the medical bills, which amount to $1.6 million and still growing. Compacting their struggle was Magda’s battle with cancer, which she beat twice. Nathaniel’s positivity helped get them through these medical nightmares.

His outlook has also helped him deal with being teased (by children and adults alike) for the way he looks. But the release of the film Wonder has helped dispel some of the more awkward and ignorant responses.

“I was 8 when it came out and it changed everything. It spread a lot of light on facial differences. People became more understanding,” Nathaniel says. “Now, in school, I’m treated like everyone else. People are really nice.”

The Newman family
| Credit: Brandon Hill

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His younger brother, Jacob, also noticed the change.

“Growing up with a brother with TCS forced me to be mature. I had to protect Nathaniel when we were younger, before Wonder,” he says. “I was his bodyguard. When kids started staring, I’d stand in front of him and just boil inside. I was the police officer for Nathaniel.”

With his family’s support and his own strength and positivity, Nathaniel has navigated a harrowing medical journey — and a society that can be less than accepting.

“I write in my book that, ‘I’m not normal and neither are you,'” says Nathaniel, who no longer has his trach and is practicing tae kwon do. “And what I mean is that if we were all normal, we’d all have to be the same.”