in one nanosecond, everything, every single thing, changed. >> it was surreal. >> a young couple starting a family. but 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 do. >> we held thnathaniel 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 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 when i'm having a good time, i forget what i look like. >> this special edition of "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 expectant mothers to keep trying. nanda newman with husband russell has been in labor for hours. what was the doctor telling you about why the labor was taking so long? >> well, it's a first krifry. you know. you just got to push harder. >> they finally say, we've 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 a just three years earlier when magda and russell newman married

in 2002. magda became pregnant shortly after. were you ki were you excited? >> yes, very. >> no blips on the radar screen? >> yes. >> reporter: 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 god, oh my god. >> i thought he was dead, that's what i thought. >> what happened, what's happening? >> i saw shock on people's faces. big eyes, and 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, i'm like, what's going on? is he alive? what's going on? i want to see the baby. >> they didn't want to show you. >> they were scared to show me. >> 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 remember it being an old black and white picture of a teenager with treater collins and i remember thinking, that's going to be my kid? >> reporter: treecher collins is an extremely rare genital cranial facial disorder. it affects just 1 in 50,000 people. i can't imagine first-time parents, so excited to have a baby. in one nanosecond, everything, every single thing, changed. >> it was -- it was -- it was surreal. >> reporter: they named their son nathaniel. he is transferred to the neonatal intensive care unit at nyu where he will spend the first month of his life.

there the newmans meet nurse pat chabaro. what do you remember most about that day 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 go away? >> right. >> and unfortunately, it's a journey, it's not a surgery. >> reporter: for the newmans, the journey was just beginning. they say it was something unexpected that happened in the hours after thnathaniel was bor that sustained them through the early days and then the later months and years ahead. >> we turn on the tv. and 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 day.

♪ that song resonated. we got up out of the bed and we went down to the nicu and we held thnathaniel 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. but most harrowing of all are his breathing complications. his nasal passageway is nearly solid bone. and his airway is so 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, eating, et cetera, he is no different than any other boy. >> reporter: but because of those 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. and then he's going to be 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 about, what if water gets in there? >> reporter: by the time nathaniel turns 2, russell and magda are ready to try for another child. but because of the hereditary nature of treecher collins, there is a 50/50 chance their second child will have it as well. there's no way to know for sure until delivery day arrives. >> this delivery was so quick. i walk into the hospital. 20 minutes later, jacob was born. >> jacob literally came out looking like a porcelain doll. 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 newmans had relocated to reno, nevada, after rules got a new job. and that is where i met nathaniel for the first time. >> nice to meet you, buddy. >> how do you explain how you look different? >> i just explain that i was treecher collins, and i know everyone looks different, except i look a lot more different than everyone else. >> does it bother you? >> no i kind of like it. it's fun because i stand out. >> i'm curious, when you realized, hey, my face is different from other people's faces? >> one of the first kids called monster. >> a kid called you a 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: and over the years, nathaniel's differences have affected his little brother jacob too. he can sometimes find himself acting more like a big brother. your parents are telling me how when you were so little and kids would be mean to nathaniel, you'd get up there with your little fist and go, hey, leave my brother alone. >> i still do that. but i get more into it. >> do you think of yourself as your brother's protector? >> i think he can protect himself pretty good. >> here comes superhero nathaniel! >> sometimes i forget i have treecher collins. >> you do? >> yes. sometimes when i'm having a good time, i forget what i look like. >> when we were zip line did you f forget? >> no, i was just having a lot

of fun. >> reporter: 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 want to be treated line everyone else. >> reporter: 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 treecher collins. when the book came out in 2012, nurse pat chabaro was one of the first to read it. she immediately reached out to the newmans. >> literally read it in three hours, cried the whole time. calling pat and going, pat, did she spy on us?

this is freaky. >> reporter: today "wonder" is more than a book, it's a phenomenon. selling more than 5 million copies. and 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. it's 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. >> tired. i want it to be over. clot... i sure had a lot on my mind. my 30-year marriage... ...my 3-month old business... plus...what if this happened again?

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this special edition of "nightline," "wonder boy," continues. >> smile! >> reporter: after a lifetime of surgeries, today 12-year-old nathaniel newman is heading back into the operating room. >> ready? >> yeah. >> this is the drill. >> reporter: 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? >> yeah. >> i 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 rules 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 beeping 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 when you've seen him from previous surgeries. >> reporter: when nathaniel wakes up, his jaw is wired shut to that metal halo. but after just 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 a walking pneumonia. i just went to emergency room. >> reporter: the doctors quickly 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 lympholymphoma. >> i was angry, i couldn't believe it. >> reporter: caretaker turned patient herself. she begins a series of grueling chemotherapy treatments, eventually losing her hair, but never her sense of purpose. >> i had 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 i 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. we 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 remarkable is able to dance. ♪ >> now we can check? >> reporter: after three months nathaniel is back at the hospital. doctors are ready to remove that halo. >> see you in there, okay? >> reporter: with nathaniel in surgery, magda heads home to rest and the crushing emotional weight of all they've been through suddenly hits rules. >> 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 milestones. >> happy birthday. finally you are teenager and your trach is out. >> one, two, three. ♪ happy birthday to you >> nathaniel celebrated his 13th birthday. on his birthday you wrote an amazing message. >> you, my little wonder boy, you show me every day that 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. >> reporter: it's been a month since nathaniel's trach came out. while he continues to recover, we brought the whole family to los angeles. they're here 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. >> oh my god, can i hug you? we're in christina aguilera's house! >> welcome. let's go hang out. >> reporter: once everyone settles in, magda tells christina that 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. >> what is it? >> 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 just this week 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 macy's. when you're close to the people you love, does psoriasis ever get in the way of a touching moment? if you have moderate to severe psoriasis, you can embrace the chance of completely clear skin with taltz. taltz is proven to give you a chance at completely clear skin.

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our thanks to elizabeth vargas and her team. thank you for watching abc news. as always, we're online at abcnews.com and our "nightline" facebook page. thanks for the company, america. have a good weekend. >> hey, everybody, it's whiz kids week. today, we're playing our game with some very bright kids who've worked hard in school, and now they're hoping all that hard work is going to pay off in a very big way because they're here to play "who wants to be a millionaire." [cheers and applause] [dramatic music] ♪ welcome to "millionaire." are you guys ready for whiz kids? [cheers and applause]

well, from new orleans, louisiana, let's welcome back kaden oqueli-white. [cheers and applause] the pride of new orleans. you're looking sharp. i like the new ensemble. you're looking good. >> thank you. >> and your game's looking pretty good. you're at $7,000 already. >> whoo! >> you still have two lifelines as we get back to your game today and we try to add some money to that total, so let's play "who wants to be a millionaire." [cheers and applause] [dramatic music] ♪ we start you off today with a $10,000 question. here it is. biologically speaking, which of the following falls under the scientific category of megafauna? >> well, fauna, to me, just screams plants, so it'd have to be a large