One family's story of hardships, triumphs with son who has rare craniofacial disorder

Russel and Magda Newman share their family's incredible story of raising their son Nathaniel, who has an extremely rare congenital disorder.
6:47 | 11/17/17

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Transcript for One family's story of hardships, triumphs with son who has rare craniofacial disorder
Thank you, Lara. Now an extraordinary and beautiful story we want to share. It's being called the ale rife-wonder, that THA Nall Newman was born with a rare disorder but much like the child at the center of the book "Wonder" and Elizabeth vargas spent years with him for a special hour of "20/20" that airs tonight and Elizabeth is good enough and has an inspiring message of love and acceptance. Wonderful to have you here. It's great to be here. The par les between Nathaniel and the book "Wonder" are incredibly striking. The book is a phenomenon and translated into 45 languages but for the Newman family this story is a personal one of courage and of kindness and the ability to see the beauty in everyone. They are the terrifying words no parents-to-be ever want to hear after nearly 17 hours of labor. They finally come in and say, look, we got to get this kid out. He is showing some signs of distress and then our life changed forever. Tell me what you saw. It didn't look like a human being. It didn't look -- He didn't look like a person. It was that different. Reporter: For new yorkers Magda and Russell Newman, the birth of their son whats not a scene of happiness but one of horror. They didn't want to show it to me. They didn't -- They were scared to show me. I think they were scared at first because he had no cheekbones and no upper and lower eyelids, just completely disfigured. Reporter: Nathaniel's condition caused by tree treachercollins and he was born without cheekbone, eye sockets or ears. He would spend the first month of his life in the neonatal intensive care unit and their journey as a family was just beginning. We've never done cosmetic surgery onna thannial. Everything we've dune his whole life has had some benefit to life function. By age 11 he had undergone 53 surgeries. The newmans had relocated to Reno, Nevada after Russ got a new job and that's where I met him for the first time. Nice to meet you, buddy. I'm curious. When you realized, hey, my face is different from other people's faces. One of the first kids called me monster. A kid called you a Mon 12er. Yeah. That must have hurt your feelings. And then I realized I don't look like anybody else so I was different. Different but still a kid. So to ease the transition of starting at a new middle school, the newmans came up with a plan to send letters to Nathaniel's classmates. My name is Nathaniel Newman and I am 12 years old. I am different. I don't want you to be surprised when we meet. I have three dogs, I like pokemon a lot as well as "Star wars." I really just want you to treat me like everyone else. Reporter: That than yell's story is strikingly similar to the one in the book that's become a worldwide phenomenon. It's "Wonder," the fictional story of a little boy named augie Pullman who looks a lot like that than that will Newman. We incorporate the book into the welcome letters. You might have read the book "Wonder." If you have then you already know a little about me. That book is single-handedly making life easier for children with facial differences. It's just a fact. The newmans made a promise to each other and to Nathaniel the night he was born telling him they would not hide him from the world and they haven't. Their parents have always taken him out. It's not been an easy journey but we followed them for 2 1/2 years through Nathaniel's first day at middle school and through an incredible grueling rare and risky surgery he underwent to help him breathe better and get rid of the trach tube. It's for the entire family. It is. Speaking of family, you read the book with your two boy there is that's rye. When the book came out in 2012 I read it to my kids and it was one of my favorite bedtime books I read to them and a couple of years later my mom e-mailed me and forwarded me one from a woman in heir book club. Has Elizabeth heard "Wonder" because I have a real-life wonder boy in nye classroom. It's been an incredible journey. I was surprised to learn Nathaniel's parents were surprised when he was born. Most parents of teacher Collins babies are not known. His mom was 24. She's a fitness buff. In incredible health. They all thought, you know, she would be fine. There was very little prenatal testing. You mentioned this surgery he this is revolutionary. Yes, this is a very rare and risky surgery. Nathaniel's mom calls it barbaric and in many ways it is. It was almost too much to see what he went through. But he couldn't breathe. For him going through life was like breathing through a soda straw which is why he had to have a trach tube and you can't -- it so limbs you so they needed to get that trach out and ford to do that they had to rearrange the bones in his face and we're along with the whole family as they go through this. Had to be so incredibly painful in the message from the book wopdz is choose kindness. When you have the choice confronted with being right and being kind, choose kind and that is really the theme of Nathaniel's life and of our special tonight which is something I think this book means a lot to a lot of families in this country. You were very kind, too, my friend. You arranged a special meeting. I did. A big surprise with Christina Aguilera for the family. It was -- I got to tell you, they were -- Because her song "Beautiful was" was playing on the grammys the night that than wall was born. The song "Beautiful" was playing the night Nathaniel was playing. They were sobbing, crying. Saw the song, gave them the courage to walk down the hall and hold Nathaniel for the first time. Chills. Wow. Chills when we see that. You might want to watch with a box of Kleenex. Watch with your daughters in cannot wait to do it. All of you can see Nathaniel's story on a special "20/20" right here on ABC tonight.

This transcript has been automatically generated and may not be 100% accurate.

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