5-year-old NJ boy needs liver transplant to survive: Can you help?

[00:00:00]Ryan Christopher, you were on with us this morning and um >> tell us this just amazing story um about this family in New Jersey and just some uh just just some ways that maybe people can can help.

[00:00:13]>> Yeah. So, little Maxwell, he's the cutest. You're going to see him. There he is right there. Little uh future NBA superstar. So cute. He's 5 years young.

[00:00:20]He's from Denellan, New Jersey. Now, his mom, she's a labor and delivery nurse, I believe, at Barnabas in Jersey. Pops. He is a New Jersey uh state trooper as well. So, think of all that they do for people on a daily basis, right? Well, now this guy, he needs a little help. He is in need of a liver donation. He's only 5 years young. And we went down to Jersey to hear a little bit about Maxwell's story.

[00:00:41]>> All right. And uh looks like we have Maxwell's parents on the line with us right now. And so, we appreciate them zooming in with us here on Newsroom Live. So, let's see if we Oh, good morning, folks.

[00:00:52]>> Hi.

[00:00:54]>> Morning. Hi, Max.

[00:00:56]>> Say hi.

[00:00:58]>> Say hi, buddy.

[00:00:59]>> Say hi. No, shy.

[00:01:02]>> I know it's kind of last minute that um we asked you to join, so we do appreciate you very much tuning in with us this morning. I guess first just to introduce yourselves and uh tell us a little bit about Maxwell.

[00:01:14]>> I'm Julianne. Um >> that just >> I'm Justin. I'm actual dad. And this here is What's your name, buddy?

[00:01:27]>> You're not telling you. Okay. His name is Max.

[00:01:28]>> It's okay. It's okay. I I have four kids and so sometimes, you know, they can sometimes they're all all they want to do is talk and then sometimes when you want them to talk, they don't >> they don't want to say anything else.

[00:01:37]>> You get it?

[00:01:38]>> Um, if they're in the mood, they'll do it. If they're not, they're not going to do it.

[00:01:42]>> So, tell us a little bit about uh a little bit about Max and his journey.

[00:01:47]>> Um, so Max was born with a rare liver disease called biliaryia. Um it's 16 to 20,000. It's rare and it's um in one in 16 to 20,000 newborns. Um he was officially diagnosed with the disease um when he was 12 weeks old.

[00:02:06]But prior to that we did notice that he was um staying jaundice. Um his stool was pale. There was no color to it. Um so what we found out is um pretty much with bilary treasia um the liver is missing the ducts where there's nowhere to drain the liver. So all of the stuff that happens in the liver it can't drain. So that's where the the yellow was showing on his skin. Um so when we took him to the hospital they created a little drain where they cut a small loop intestines. They connected into his liver where it drains. um and it's been working great. But now he has the complication of the portal hypertension where pretty much um there's so much pressure in the portal vein. All the blood that that the spleen is producing is um trying to get through the liver.

[00:03:00]But because the liver is ultimately dying and like dying every day um it's no longer like accepting the blood. So it's like getting hard, stiff, and it's not allowing the blood flow. So the blood flow is getting backed up and so if you think of if you picture it where it's getting backed up the spleen is just getting bigger and bigger and bigger.

[00:03:20]>> So and last week >> not not to interrupt but we we just want to ask so now you're you're in this process right where he needs uh a liver donation. So you've worked with multiple hospitals now and he's only five years old, right? So how how's he feeling now?

[00:03:34]And he calls it his his diamond liver, right? It's it's rare as as he is.

[00:03:39]>> Yeah. He's looking for his diamond liver.

[00:03:41]>> Yeah, that's right. And it's very important. So, you you guys are in the process. We aired this story, Dan. We've already had a lot of people messaging us on social media asking how can they get tested? All you have to do is be of old blood type, right? That's one thing that you're looking for. And it's between the ages of what?

[00:03:58]>> Um 18 to 50.

[00:03:59]>> 18 to 50. All right. So, in in the process, essentially, somebody will donate a small piece of their liver uh to little Maxwell right here, and it'll regrow in his body. I was asking about that because I it it it was unclear to me how Oh, there you go.

[00:04:12]>> got the whole fan.

[00:04:13]>> It was kind of unclear to me how it would work. Um, you know, if I if somebody was a viewer, obviously probably over the age of 18, and they wanted to donate. Um, h how would that work that what what would have to happen?

[00:04:26]>> Um, so they would have to go through a very um extensive work up. So, because they want also the donor to be safe and keep the donors healthy, right? we they're not going to go ahead with the surgery if they don't feel the donor is in a in good condition and healthy for the donor to keep them safe. But ultimately what they do is um they just take the left part the left lobe of your liver >> um they cut a piece of it and at New York Presbyterian um they said that the way they do it is everything is laparoscopically which is actually incredible. Um, and they cut a they cut a piece of it and then they put into a bag and then it puts on ice and then it goes to max. Um, and then I was told that by six weeks it's your own liver will almost be the size it was um originally and his would be growing too as well. That's amazing.

[00:05:25]So like yeah like it it's going to regenerate but the left we don't have we won't grow a left lobe anymore our right side will just keep expanding because now it has all that space >> and just so that's how >> I know the family you guys have four kids right is four kids just like you >> so I know uh I know >> you guys got to have a play date now for sure for sure >> look at the backyard I mean they got the they got the basketball hoop >> we're in Essex County so I'll have to rent the whole entire back room >> um and Justin, I know I mean obviously you guys have a a full beautiful family and and I imagine that you are always trying to keep things positive and make sure that everyone is kind of living as close to what would be a normal life as possible. I mean how do you guys kind of maintain that positivity?

[00:06:11]You know, we we remind each other, you know, this tooth shall pass, right? It's uh everything is temporary. Pain is temporary. We just push forward, you know, we keep going. He we teach the kids emotional control, you know, self-control. Everything's about your mindset. So, that's what we try to teach the kids because we're also teaching ourselves, too, >> because you know, you train your mind just as much as your body. So, as long as we have that, then we'll be fine.

[00:06:38]Wow.

[00:06:38]>> And um there was the social media campaign. Um what what has the sort of response been? How did you guys start that? I also see your shirt. I >> think Maxwell has fallen.

[00:06:47]>> I know he's I'm over these guys.

[00:06:50]>> He's ready. Um I know you see I see Bub Club as well. What is What is a Bub Club?

[00:06:56]Um, so his his nickname was always Bubba and when he was um diagnosed, um, we were like, let's let's start something that that's just for Maxwell.

[00:07:08]So, we liked Bub Club because it rhymed.

[00:07:11]And we just stuck with it the whole time. So, I've just been um having these fundraisers because a lot of people want to wear um >> represent represent Max and >> and especially on like December 1st like our whole community wears um this shirt to represent Max and it is a really great way to um bring awareness to this rare disease because a lot of people will say oh what does bub club mean and then people will explain and then that's how >> that's another way for us to um spread awareness for this uh very rare disease.

[00:07:43]Certainly. What What has been one thing that you guys have learned about yourselves through the whole process?

[00:07:48]Because as Dan mentioned, you're a beautiful family. You you seem to to say all the right things and and do all the right things for for your kiddos. But what have you learned through this about yourselves with Maxwell?

[00:08:00]>> We're just as resilient as kids. You know, you adapt, you survive, >> and we just >> Yeah. Right, buddy.

[00:08:07]>> That's right. Max knows. a lot.

[00:08:10]>> You learn a lot about life as you're going through it.

[00:08:14]>> They teach us, we teach them.

[00:08:16]>> It's a full circle.

[00:08:18]>> Yeah. And it's it's one of those things where you really you you really don't know how strong you are until you're actually >> in this time.

[00:08:29]>> Uh and and just um in case anybody wants to try to get in touch, maybe they know somebody who knows somebody or whatever.

[00:08:36]Uh how should people try to get in touch with you? um social media or or anything else?

[00:08:42]>> Yeah, I I feel like social media has been very powerful um for us to get Maxwell's story out there. Um I know a lot of people have been tagging Ryan and everybody to like try to get our story out there. Um and social media is a very powerful platform and I think like that would be a great way to connect with us.

[00:09:00]Um because I do respond to everybody. Um because even if they're just saying that they're thinking about me, honestly, like that's all I need to hear. like I don't we don't ask for much and to hear that people are thinking about us and like our story is reaching like the west coast and you know it it really means a lot to us and it really keeps us hopeful and pushing for another day and cuz sometimes it's so hard like I've been anticipating this moment but and I thought we can prepare oursel by anticipating it um but honestly like walking this road has been like a it's been emotional roller coaster But through it all, we're still so grateful for this um this life because, you know, we have each other to really get through things together and our kids are truly truly resilient and have just been >> and just going along with it.

[00:09:51]>> And and can you give us the website?

[00:09:52]It's nyp.org.

[00:09:55]>> np.org living donor liver.

[00:10:00]>> Liver. That's it right there. So So you can apply to be tested right there. And even if you you want to donate and you're not necessarily a match for Maxwell, some of those donors can go on to help other people. And I know that some members of your family are also being tested. So that could potentially happen to have a match within your family. But just by having more donors in the system, you're able to help save someone else's life.

[00:10:20]>> And and um I know Ryan, you'll have the story posted uh linked on your Instagram. It's already there.

[00:10:26]>> And uh we're gonna try to make sure we get you guys a YouTube link of uh of this of this interview. Is there is there a YouTube or a Instagram that you guys want to shout out real quick?

[00:10:35]>> Give them yours.

[00:10:36]>> Oh, okay. U my Instagram handle is Mama Molina. M A M A M A L I N A O.

[00:10:45]>> All right. Um thank you so much, Justin, Julian, and uh Little Max.

[00:10:51]>> Thank you guys.

[00:10:52]>> He's ready for a nap right now. He's like, I'm I'm over this whole superstar thing.

[00:10:55]>> He's good. He's ready for the He wants to hop back on the Roblox. Um, thank you guys. Thank you guys very much. We appreciate it. Best of luck, Max. Yes.

[00:11:04]Yes. Yes. We appreciate it.