Boy with Treacher Collins has surgery to rearrange the bones in his face: Part 4

The surgery Nathaniel Newman underwent would help open up his airway so that he would no longer need a tracheostomy.
6:47 | 11/18/17

Coming up in the next {{countdown}} {{countdownlbl}}

Coming up next:

{{nextVideo.title}}

{{nextVideo.description}}

Skip to this video now

Now Playing:

{{currentVideo.title}}

More information on this video
Enhanced full screen
Explore related content
Comments
Related Extras
Related Videos
Video Transcript
Transcript for Boy with Treacher Collins has surgery to rearrange the bones in his face: Part 4
Reporter: Today is no ordinary day for the Newman family. All right this is exciting. We're heading to the reno-tahoe international airport. To pick up jono Lancaster. I'm excited. Reporter: In the world of cranio facial disorders jono Lancaster is a rock star. I have a "Welcome to Reno" sign for jono. Hey, there he is. Hi. Hey guys! How you doing? Hi. Reporter: Jono, a 33 year-old from England is perhaps the best known person on the planet with treacher Collins. I don't know how many people has called me names a laughed at me. Reporter: He spends much of his time traveling the world and meeting families like the newmans. You're the first adult with treacher Collins he's ever hung out with. Wow. Right? All of a sudden you're quiet, you didn't shut up all morning, now you're afraid to talk? Reporter: Nathaniel may be a little star-struck, but it's Magda and rus who recognize the magnitude of this moment. What it means to talk to someone who knows the uncertain path they are on. Guys, get as close as you can. That'll work. That's a good one. Reporter: Because he too has walked it. Aw, that's awesome. Reporter: Life for jono was tough from the start, born to parents who had no idea he would have treacher Collins, they gave him up just 36 hours after birth. When I was young, there'd be the odd playground game of run away from jono in case you caught treacher Collins. They'd pull their eyes down. What did you most want to hear from him or ask him. I just wanted to know about his teenage mostly. His teenage years? Yes. I know soon the boys will be getting girlfriends. I just want Nathaniel to be a part of that too. Girls used to ask me out as a dare or as a joke, or they used to flirt with me and make it really obvious that they were making fun of me. And I got used to name-calling and bullying and stuff like that. And I kinda got used to that. But the girls. It bothered you. It really upset me. The fact that nobody found me sexually attractive really hurt. Reporter: Although it took time, life began to transform for jono around the time he began transforming himself. In his twenties he developed a passion for fitness, looking back he says he was trying to shift the focus from his face to his body, it eventually led to a job as a personal trainer and it was at the gym where he unexpectedly met Laura Richardson. The two struck up a friendship and one day jono asked her out on a date. When the two of you are out on a date, do people stare? Yeah. And I get really quite, like, defensive. I'd be like, "What are you lookin' at?" You'd call them out. Yeah, I would because it -- it would, like, bubble up inside me. And I -- it made me angry, but I do not notice it at all now. There's a lot of kids out there that are really, really good at hiding their feelings. We're gonna Skype Laura in London to say hi to jono's girlfriend. Reporter: In Reno, the newmans get a chance to meet Laura as well, over Skype. Look how gorgeous she is. Seriously. Hi, Laura. Hi. I just have to tell you, you loving jono the way you do, makes me and Magda so happy about Nathaniel's future. Thank you. Have you ever felt like people stared at you a lot when you were a kid? Yeah, um, I did have people staring at me. And when I was younger, I always thought they were staring at me in a bad way. Um. But as I've got older, I've learned that loads of people stare at me because, you know, they like my hair, or they like my clothes. You know? They're not staring at me in a bad way. Sometimes they stare at you in a good way Oh Korean barbeque is ready How many surgeries have you had when you were a kid? I think I must have had maybe like 15. That must've been rough Reporter: When the topic of surgery comes up around the dinner table there is one major difference that is clear, jono has never needed a trach, the life-altering breathing tube in Nathaniel's throat that he's lived with since he was a month old. Now doctors may finally have a solution that could give Nathaniel a trach-free life. But it's a gamble. One more major surgery, which is -- Barbaric. Barbaric? Barbaric. Why? It's so extreme. Reporter: The newmans have been meeting with doctors at the Seattle childrens hospital, trying to decide if they are ready for a surgery so radical it's only been preformed on one other child with teacher Collins. It is I would have to say, a terrible surgery for a child to go through. Reporter: Dr. Richard hopper is the chief surgeon at the cranio-facial center. He knows how debilitating Nathaniel's trach tube can be. We gotta make sure you're clean. It's keeping him alive. But for him to have the quality of life that we all take for granted -- the tracheostomy needs to be gone. Reporter: In order for that to happen Dr. Hopper will have to literally rearrange the bones in Nathaniel's face opening up his airway. What we need to be able to do is separate his entire face off of the skull and swi face forward into the correct position. Reporter: At his consultations no detail is spared from Nathaniel. He listened to the whole thing, very attentive, and finally he turned to the doctor and he said, "I have a question." Do they change their face a lot? It's not giving you a new face, but it puts your face into a different position. Will I still look like this? Yes. He goes, "I want my trach out. But you're not changing the way I look. I love my face." That's extraordinary. I really learned the meaning of the phrase, no pain, no gain. So I realized the meaning of that. That's right, you're going to have a little bit of pain. But then I'm going to gain. Reporter: After months of preparation the day of the surgery is finally here. Yeah. Any questions for me today? No. I know we've talked about this surgery a lot. It's going to seem like a split second to you. One second I'm on the bed, and the next I'm sitting in a hospital room. Yeah. Ready? Yeah. This is the drill. Reporter: As he has done nearly 60 times before, a family tradition of sorts, Russ carries his son into surgery. Wanna kiss her one more time?

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

{"id":51236569,"title":"Boy with Treacher Collins has surgery to rearrange the bones in his face: Part 4","duration":"6:47","description":"The surgery Nathaniel Newman underwent would help open up his airway so that he would no longer need a tracheostomy.","url":"/2020/video/boy-treacher-collins-surgery-rearrange-bones-face-part-51236569","section":"2020","mediaType":"default"}