ABC News' Elizabeth Vargas on being inspired by a boy with Treacher Collins and the book 'Wonder': Reporter's Notebook

Elizabeth Vargas on the inspiring life of a boy living with Treacher Collins.

ByABC News
November 17, 2017, 8:37 AM

— -- One of my favorite things to do with my children is to read to them.

A few years ago, the bedtime book was "Wonder," and it was hands-down one of the best books we read together. So, a few years later when my mother forwarded me an email from a member of her book club, I took notice. “Has Elizabeth heard of the book 'Wonder?'” the email read. “If so, I have the real-life wonder boy in my class.” I jumped for the phone.

We made contact with the Newman family, living in Reno, Nevada, and spent the next two and a half years following Russ and Magda and their sons Nathaniel and Jacob. Nathaniel, now 13, had been born with a severe case of Treacher Collins syndrome. It’s a genetic condition that radically affects the bones in Nathaniel’s face. Russ and Magda were shocked when Nathaniel was born – they had no warning anything was wrong.

They are incredibly brave people, who have been through so much. But they made a pledge to each other, and to Nathaniel, that they would not hide him from the world, or the world from him, and they allowed my producers and me to follow them for more than two years. We were along with him on his first day of middle school, where students had all gotten a letter from Nathaniel explaining his condition, along with a picture, so they could prepare themselves.

We were along when the family met a man with this rare condition, who was able to explain what Nathaniel will probably face in his teenage years. And we and our cameras were there when the Newmans decided to try a risky and revolutionary surgery that might allow Nathaniel to breath without a trach tube in his throat. Magda Newman calls the surgery barbaric, and honestly it was. But no one was braver than Nathaniel, who chose to take the risk.

Shadowing a family like this for as long as we did with our cameras is a delicate thing. We assigned one of our best producer/shooters for this, Jeff Schneider. After the first few hours of recording, he was able to make the Newmans so comfortable, they could almost forget he was there. We captured some truly intimate moments with this family – the worry about how other kids would treat their son, the anguish as they carried him into the operating room for yet another surgery. My producers, Sean Dooley and Jen Joseph, and I all became very close to the Newmans. They are remarkably candid about their most difficult moments, about their worries and their fears. I interviewed them almost half a dozen times over the two years.

Getting to know Nathaniel was wonderful. He is a sensitive boy, but so very strong. He was four years old when he first realized he looked different. Sometimes, he told me, in moments of pure joy, he can forget for a moment what his face looks like. But he knows he will always look this way, no surgery can correct it, and that there will people who will at times be cruel.

But one thing has made life easier for Nathaniel: the book "Wonder," by RJ Palacio. Russ Newman says that book has done more than anything in the world to ease the way for children like his son. The Newmans could not believe the story when they read it. It is their story. As Russ told me, “Was RJ spying on us?” RJ likewise told me that when she met Nathaniel, she exclaimed, “It's Auggie Pullman come to life.” It really stretches credulity, the similarities between art and life are so strong.

We interviewed RJ about how she got the idea for the book, and how she never expected it to be the phenomenon it has become: Five million copies sold around the world, translated into 45 languages, and now a blockbuster movie.

If the book has eased the way a bit for Nathaniel and other children like him, we hope our hour Friday night will do the same. It is so much easier to be humane, to be kind, when the person in front of you is someone you know. We are excited to introduce our viewers to Nathaniel, and the Newman Family.