in one nanosecond, everything, every single thing, change the. >> it was surreal. >> a young couple starting a family. in the delivery room a terrifying discovery. >> i saw shock on people's faces. they didn't want to show to it me. >> their son born with a rare genetic disorder. >> it didn't look like a human being. he didn't look like a person. >> then these new parents did the thing all parents did. >> we held nathaniel for the first time. we held our son. then our life changed forever. >> tonight, elizabeth vargas on one family's inspiring journey. seemingly ripped straight out of a best-selling novel. >> you may have read the book "wonder." if you have, then you already know a little bit about me. >> the struggles and heartaches. >> so tired. i want it to be over.

>> a brother's love. >> you get up there with your little fist and go, hey, leave my brother alone? >> i do that. >> the brave boy at the center of it all. >> sometimes if i'm having a good time i forget what i look like. >> this special edition of "nit l ""nightline" "wonder boy: a story of transformation," will be right back.

this is a special edition of "nightline." "wonder boy."

>> it is nearly midnight on a frigid february friday in manhattan. nurses on the labor and delivery ward at st. luke's hospital are urging one of the speck ant mothers to keep trying. magda newman with husband russell has been in labor for hours. what was the doctor telling you why the labor was taking so long? >> well, it's the first delivery. you know, you just got to push harder. >> they finally say, look, we got to get this kid out, he's 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 like a human? >> he didn't look like a person, it was that different. >> reporter: a crushing blow to a dream of parenthood that began just three years earlier when magda and russell newman married

in 2002. magda became pregnant shortly after. were you excited? >> yeah, very excited. >> everything was healthy? >> yes. >> absolutely no blips on the radar screen? >> yes. >> reporter: but back in that hospital room, after nearly 17 hours of labor, when magda finally delivers, it is not a scene of happiness but of horror. >> i don't remember fainting. but i certainly remember screaming. >> you were screaming so loud. >> "oh my lod, oh my god. >> i thought he was dead. i saw shock on people's faces. big eyes. what's going on here? what happened? i don't hear baby crying. no noise. >> nobody's telling you anything? >> nobody's telling me anything. what's going on? is he alive, what's going on? i want to see the baby. >> they wouldn't show you. >> 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: and even more terrifying, the baby is not breathing. magda is left alone on the delivery table while doctors frantically work to save her baby's life. >> while that was going on, a doctor called me out of the room to show me a textbook. i just remember it being an old black and white picture of a teenager with treacher collins. i remember thinking, that's going to be my kid? >> reporter: treacher collins, an extremely rare genital facial standard. it affected 1 in 50,000 people. i can't imagine first-time parents. you were so excited to have a baby. in one nanosecond, everything, every single thing, change the. >> it was -- it was -- it was surreal. >> reporter: they name their son nathaniel. he is transferred to the new 98 owe natal intensive care at nyu

where he'll spend the first month of his life. what do you remember most about that day that you met the newmans? >> they were absolutely devastated. families will say, when is the surgery? when is the surgery that's going to make this all better? >> go away, get better, right. >> unfortunately, it's a journey, it's not a surgery. >> reporter: and for the newmans, the journey was just beginning. they say it was something unexpected that happened in the hours after nathaniel was born that sustained them through the early days and then the later months and years ahead. >> we turn on the tv. it was the grammy awards. the show starts with christina aguilera singing the song "beautiful." ♪ i am beautiful no matter what they say ♪ >> you talk about timing. and no matter what people say, no matter what people do, you're beautiful in every single way. ♪ ♪ words can't bring me down

>> that song resonated. we got out of the bed and we went down to the nicu and we held nathaniel for the first time. we held our son. sorry. >> reporter: unlike a typical infant's face, nathaniel was born without cheekbones, eye sockets, or ears. most harrow are breathing complications. his nasal passageway is nearly solid bone. his airway so is narrow it's like trying to breathe through a soda straw. but as different as nathaniel looks on the outside, that's where the differences end. >> other than his appearance, and how his life functions, breathing, eat, et cetera, he is no different than any other boy. >> reporter: but because of malformations in his face, in his first year of life he has more than ten surgeries. >> we've never done cosmetic surgery on nathaniel. everything we've done his whole life has had some benefit to

life function. >> reporter: when nathaniel is 1 month old, an emergency tracheotomy is performed. a breathing tube is inserted into his throat. a procedure as life-altering as it is life-saving. >> once you become dependant on a trach, your life changes. then he's prone to infection, which ended up proving to be true. where a normal parent, you know, bath time is this cute, wonderful experience. for us you're worrying, what if water gets in there? >> reporter: by the time nathaniel turns 2, russell and magda are ready to try for another child. >> i walk into the hospital. 20 minutes later, jacob was born. >> jacob literally came out looking like a porcelain doll. a gorgeous, beautiful -- >> reporter: throughout the years nathaniel and jacob shared all the moments and memories that brothers do. but for nathaniel, things were always different. by age 11, nathaniel had undergone 53 surgeries. the new mans had relocated to

reno, nevada, after russ got a new job. that is where i met nathaniel for the first time. how do you explain how you look different? >> i explain that i have treacher collins, and i know everyone looks different, except i look a lot more different than everyone else. >> does that bother you? >> no, i kind of like it. i think it's fun because i stand out. >> i'm curious, when you realized, hey, my face is different from other people's faces? >> when the first kids called monster. >> a kid call outa monster? >> yeah. >> that must have hurt your feelings. >> yeah. then i realized that they don't do it to anybody else. so i was different. >> how did that make you feel? >> i was insulted. >> yeah, i'll bet. were you mad? >> yeah. i guess. a little. sometimes. >> why do you think kids do that? why do you think they say mean things to kids who look different? >> because they don't really think about what they're saying, and their parents don't really

do anything about it. >> reporter: over the years, nathaniel's differences have affected his little brother jacob too. he can find himself acting more like a big brother. your parents are telling me when you were so little and kids would be mean to thnathaniel, you'd get up there with your fist and go, hey, leave my brother alone. >> i started to go that. i get more into it. >> do you think of yourself as your brother protector? >> i think he can protect himself pretty good. >> here comes superhero nathaniel! >> sometimes i forget i have treacher collins. >> you do? >> yeah, sometimes when i'm having a good time i forget what i look like. >> when we were zip lining did you forget you had treacher collins? >> yeah, i was just having a lot of fun. >> reporter: it's the fall of 2015. nathaniel's first day of middle school. to ease the transition the newmans have come up with a plan. >> russell and nathaniel sit down together and write a letter. >> my name is nathaniel newman.

i am different. i don't want you to be surprised when we meet. i really just want you to treat me like everyone else. >> reporter: but the single most powerful change in how children treat nathaniel isn't because of that letter, but because of a little blue book called "wonder." >> you may have read the book "wonder." if you have, then you already know a little bit about me. >> reporter: "wonder" tells the story of 10-year-old augie pullman, born with a facial difference a lot like treacher collins. when the book came out in 2012, nurse shivaro was one of the first to read it. she reached out to the newmans. >> literally read it in three hours, cried the whole time. i remember calling, cpat, did se spy on us? this is freaky. >> reporter: today "wonder" is more than a book, it's a phenomenon. selling over 5 million copies, translated into 45 languages. it's even become required reading in hundreds of schools across the country.

it's become part of a campaign, in essence, to be kind. >> i use this quote. if you have a choice between being right or being kind, choose kind. a simple thing. >> that book is single-handedly making life easier for children with facial differences. it's just a fact. >> reporter: coming up, will nathaniel ever breathe on his own? doctors propose a risky surgery that could mean life or death. >> one more major surgery, which is -- >> barbaric. >> reporter: a devastating development no one saw coming. >> so tired. i want it to be over. >> reporter: stay with us. dvt b. i sure had a lot on my mind. my 30-year marriage... ...my 3-month old business... plus...what if this happened again? i was given warfarin in the hospital, but wondered, was this the best treatment for me? so i made a point to talk to my doctor. he told me about eliquis. eliquis treats dvt and pe blood clots and reduces the risk of them happening again.

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this special edition of "nightline" continues. >> reporter: after a lifetime of surgeries, today 12-year-old nathaniel newman is heading back into the operating room. as he's done nearly 60 times before. a family tradition of sorts. russ carries his son into surgery. >> want to kiss her one more time? >> love you. >> see you soon. >> reporter: for the next 12 hours, surgeons will work to rearrange the bones in nathaniel's face, anchoring them in place with a metal halo attached to his head for the next three months. until those bones can finally settle into their new position. at that point, doctors will finally remove nathaniel's trach. and he'll be able to do things he's never done before. as dr. hopper heads into the operating room, magda and russ are left to wait and worry. >> it never gets easier. putting your son on a metal

table, surrounded by things that are going to, you know, cut him open. >> reporter: as the hours pass, the tension mounts. >> so my heart's beating faster and faster. >> yep, thanks. so -- he's finishing up. >> it's going to be a shock when you see him. because he's going to have metal everywhere. he's going to be very swollen. much more swollen than from previous surgeries. >> reporter: when nathaniel wakes up, his jaw is wired shut to that metal halo. after a few days there is crushing medical news. this time not for nathaniel. it is for magda, who has come down with a nagging cough. >> i started coughing. and thinking, i probably have some type of walking pneumonia. s so i went to emergency room. >> reporter: the doctors order a routine cat scan. and then -- >> the doctor says, it's cancer. i'm like, that can't be

possible. >> reporter: magda is diagnosed with an aggressive form of nonhodgkins lymphoma. >> i was angry. i couldn't believe it. >> reporter: a caretaker turned patient herself. she begins a series of grueling chemotherapy treatments, eventually losing her hair, but never her sense of purpose. >> i have two choices. to sit and mope and think, oh my god, poor me. or just get help, get healthy, and take care of nathaniel. >> people would look at everything that you as a family have been through and would say, why is so much being asked of this one family? >> you can focus on the negative and be negative. is it going to change? no. you have a choice. to look at the positive. >> reporter: it is an outlook magda has passed on to nathaniel, who while in that metal halo was unable to speak or eat, but remarkably is able to dance.

♪ ♪ >> now we can check in. >> reporter: after three months nathaniel is back at the hospital. doctors are ready to remove that halo. with nathaniel in surgery, magda heads home to rest. and the crushing emotional weight of all that they've been through suddenly hits russ. >> it's been a really long four months. it's been a really long 12 years. so, so tired. i want it to be over. >> reporter: when nathaniel comes out of surgery, he is halo-free. but there will be five more months of evaluations and tests before doctors are ready to do something the newmans have waited a lifetime to do. remove nathaniel's trach. >> you ready? this is a big day in your life. >> reporter: and the newmans have another reason to celebrate. after five months of

chemotherapy, doctors tell magda her cancer is gone. it is a year filled with milesto milestones. >> happy birthday. finally you are teenager and your trach is out. >> one, two, three. ♪ happy birthday to you >> nathaniel celebrated his 13th birthday. house birthday you wrote him an amazing message. >> you, my little wonder boy, you show me every day my strength pales in comparison to what you possess in that enormous heart of yours. i have a 13-year-old boy that's tackled more challenges than most 100-year-old men would ever dream of. >> what was it like to read that letter from your dad? >> i was happy. >> yeah? did you know that he thinks that you're that strong? >> yeah. >> yeah? do you think he's right? >> yeah. i don't know, actually. >> you don't know, actually? >> i think he's right. >> you think he's right? >> 100% right. >> reporter: after 13 years of heartache, struggle,

perseverance, and triumph, today the newmans are on their way to a full-circle surprise. >> hello, newman family. >> hello. >> reporter: it's been a month since nathaniel's trach came out. >> let's pretend this is our house. >> reporter: while he recovers we brought the family to los angeles to meet someone who's been a lifeline for them from the very beginning. >> newman family, i have somebody i want you to meet. christina aguilera! >> hi, guys. hi. >> oh my god. can i hug you? we're in christina aguilera's house. >> welcome. >> where do we go? >> let's go hang out. >> reporter: once everyone settles in, magda tells christina it was her song all those years ago that gave her the strength to hold her baby boy for the first time and raise him to know how beautiful he is. >> christina has one more surprise for you. >> oh-oh. >> what? >> she's actually going to sing

the song. >> really? >> wow. >> are you ready for this? >> reporter: this time, not for an audience of millions. but for a family of four. for whom this song has meant so much. ♪ i am beautiful no matter what they say ♪ ♪ words can't bring me down >> reporter: and the whole family was back in los angeles for the premiere of the movie "wonder." as they walked the red carpet, we were reminded of those words russ wrote in his birthday letter to nathaniel. you have shown me strength i never knew could exist. you even taught me to accept life with a smile. for "nightline," i'm elizabeth vargas in los angeles. >> this special edition of "nightline" is brought to you by nissan.

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zero first month's payment, and zero due at signing on select volkswagen models. now with the people first warranty. our thanks to elizabeth vargas and her team. thank you for watching abc news on this night. as always we're online 24/7 at

abcnews.com and our "nightline" facebook page. merry christmas and good night.

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