Couple Whose Baby Has Same Genetic Condition As Charlie Gard Speak Out and Raise Glenn's Spirits

A couple whose son has the same debilitating condition as Charlie Gard shared their story on radio Tuesday.

Russell Cruzan II and Michelle Budnik-Nap in Kalamazoo, Michigan, had no idea that their baby Russell would be born with mitochondrial DNA depletion syndrome. In a one-in-a-million coincidence, both parents carry the same gene, and their baby had a very small chance of inheriting the gene from both of them.

“[Russell and Charlie] both have mitochondrial DNA depletion syndrome; it’s just different gene mutations causing it,” Budnik-Nap explained.

Unlike Charlie, who was not allowed to leave the U.K. hospital that said he needed to die, baby Russell has options.

“We have the capability to get treatment wherever we want to right now,” Budnik-Nap said.

Cruzan and Budnik-Nap are working to get him to doctors doing experimental work with children who have this rare condition; one option is Boston Children’s Hospital.

“We were told there was no treatment and to take our son home to enjoy the time we have with him, as the disease typically takes children in early childhood,” the couple said on their crowdfunding page. “We have since learned that there IS experimental treatment out there that has shown GREAT success in others with similar conditions.”

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GLENN: Charlie Gard is this incredible story. In case you missed it, let me just quickly recap. He just died. It was a week before his first birthday. Chris Gard and Connie Yates had a son born. Everybody thought he was fine. He was normal. And then symptoms started to have an onset. And because they lived with socialized medicine, the hospital said, "There's nothing we can do," even though there is experimental and somewhat successful experimental procedures done here in America.

The hospital wouldn't let Charlie go. They fought in court. By the time the court case was coming to an end. It was too late. Doctors said here in America, it's too late for him. There's no more time left.

The parents sued the hospital said, "Please, let us just take him home so he can die at home." The hospital took them to court on that one and fought against it and somehow or another won, and he died in a hospice center.

But he did die with the parents. And both of them said, "We took Charlie out for a walk in a pushchair in the hospice park." We dressed him in babygrow with stars on it. He looked so beautiful and innocent. This is according to mom, Connie.

The hospital staff popped in. Those last five hours just flashed by. A woman said the moment we dreaded would happen in the next five minutes. Chris and I were both crying. We laid on the bed with Charlie between us, each of us holding a hand. We were both telling him that we were there and that we loved him and how proud we were of him.

Charlie opened his eyes at that moment and looked at us one last time and then closed them and passed away.

This story, the beginning of it, as far as the diagnosis is playing itself out again in Kalamazoo, Michigan. Russell and Michelle are two parents of a four-month-old. Russell Cruzan III. They refer to him as Bubby. He was born just like Charlie. Great, cute, healthy, and then he wasn't gaining weight. He wasn't eating. And doctors couldn't figure it out. And then finally diagnosed with the same disease that Charlie Gard had.

We have Russell Cruzan and Michelle Budnik-Nab on the phone. Parents of Bubby. How are you guys?

RUSSELL: Good how are you?

MICHELLE: Good. Good.

GLENN: Very good.

Can you tell us, first of all, how is Bubby doing today?

MICHELLE: He's doing pretty good. He's taking a nap right now. He -- yep.

GLENN: Okay. When you first found out -- had you -- did you know who Charlie Gard was?

MICHELLE: Not originally, no. Very shortly afterwards, yes. As soon as we -- you know, we were trying to do research into his condition, which, you know, they -- they both have mitochondrial DNA depletion syndrome. It's just different gene mutations causing it. They're both encefalomyopic (phonetic). But as soon as we Googled, you know, his condition, of course, Charlie popped up. And we started looking into his story.

GLENN: Have you talked to the -- Charlie's parents?

MICHELLE: We did. We did originally when we first found out, me and Connie talked a lot back and forth. But obviously things have been very overwhelming for them. And, yeah, they're quite busy.

GLENN: So hopefully you were going to tell me that things are quite different here in America than they are overseas. Can you tell me about --

MICHELLE: So far, yeah, we have definitely found that things are quite different. We have the capability to get treatment wherever we want to right now. We've been inpatient at our local hospital a few times, and we love them.

And, you know, if we think that he needs to go somewhere else, or he thinks -- or, yeah, he needs to go somewhere else, and they're very willing to work with us to make that happen. Also, we're just -- we're free to make an appointment wherever we want, for him to see any specialist that we want.

GLENN: Have you reached out to the specialist that the Gard parents were trying to have take care of Charlie?

RUSSELL: Yes, yes, yes, we have. And he doesn't believe treatment of that sort at this time would do any good at all.

GLENN: So does that mean that it might later, or it just doesn't apply to yourself?

MICHELLE: As far as we know, it doesn't apply to -- to Russell. We're still hoping to look at it as an option. Right now, we are pursuing BCA treatment with Boston's Children's Hospital. We're hoping that he can be considered for a -- for a trial of the medication there.

GLENN: So what is the prognosis, Russell?

MICHELLE: The prognosis, I mean, with no treatment, the prognosis is pretty grim. With the prospect of treatment, we -- we really don't know because it's all experimental. But we're hoping that it could help preserve the healthy mitochondria that he has and help keep some of the toxic levels in his body down, the lactic acid and ammonia down, because those are kind of our number one dangers right now.

GLENN: So what is this? How did it first manifest? And what is the body doing?

RUSSELL: Basically, how it all starts is me and his mother are both carriers of a gene, a chromosome that's bad. Being one bad, one good.

GLENN: Did you know that in advance?

RUSSELL: No. The only way you can figure that out is through genetic testing, which nobody gets genetic testing unless there's an issue.

GLENN: Okay. Yes.

RUSSELL: But -- so we're both carriers for a bad chromosome, and we have a good chromosome. And then we both have the same bad chromosome, just a different mutation of it. So that's how he got it. There's like a one in a million chance that two people meet each other that they're like that. And then it's still like, oh, a 25 percent chance that one of your kids can get it.

GLENN: So when it started to manifest -- because I've seen pictures of Baby Russell. And, you know, he looks healthy. Like he's supposed to. A little porky. A little fat. You know, babies are supposed to.

And then I've seen recent pictures, and he's thin. Is that how it first -- you first noticed, was he wasn't eating? Or?

RUSSELL: Well, he actually -- he started out thin.

MICHELLE: Yeah.

RUSSELL: And then he just got -- he's porky now.

GLENN: Oh, so I've seen the pictures in reverse. Okay.

MICHELLE: When the disease originally started manifesting itself, it manifested as failure to thrive first. He wasn't eating on his own. We started with the NG tube. Now he has a G tube placed in his stomach, and that has really helped him thrive and get to the point to where he's a nice, chubby, plump little guy now.

GLENN: So do you guys have insurance?

RUSSELL: Yes, I carry insurance through work. And we also have Medicaid through the state.

GLENN: So does your insurance cover this?

RUSSELL: They have started to pay something.

(chuckling)

We're working on the treatment. That's what they're working on. Prior authorization for us to go there to be seen. And then the work on -- it all depends on how it's billed. If it's billed as experimental, more than likely not.

GLENN: Can I ask -- you don't have to tell me: Can I ask what insurance carrier it is?

RUSSELL: Yes, I carry Priority Health.

GLENN: I'm sure Priority Health wants to do the right thing and help you out.

RUSSELL: From everybody I've talked to, they're doing pretty good so far. They're trying.

MICHELLE: They're trying.

GLENN: Yeah. The -- the Medicaid is kicking in, for what?

RUSSELL: Anything state-wise. In-state. They've said they don't pay out of state.

MICHELLE: But they're being helpful -- very helpful right now picking up copays, deductibles.

RUSSELL: I haven't had to pay anything out-of-pocket yet.

GLENN: Good for you. What have you -- what do you guys do for a living?

RUSSELL: I -- well, she's a stay-at-home mother now because he requires so much work.

GLENN: Yeah. Right.

RUSSELL: But I do -- I'm in construction.

GLENN: And how is business?

RUSSELL: We're busy. We're busy. I don't know if I'm getting 60, 70 hours a week.

GLENN: Good. Good.

Is there a way to donate if people wanted to help, you know, cover any of the bills as they begin to mount up?

RUSSELL: Yes. There's a YouCaring. It's -- and if you go on YouCaring, you can just search up Bubby or Russell Cruzan. Russell Cruzan should get you directly to it.

GLENN: Okay.

MICHELLE: Right now, we're fundraising to cover some of the travel costs to Boston. If we are accepted into -- into the treatment trial, there would multiple trips to Boston. So, you know, those travel costs add up very quickly. We live in Michigan.

GLENN: You guys sound -- I mean, I have to tell you, I read about your story a couple of weeks ago. And so I've got about you. And as a family, we have prayed for you all. And I thought to myself, you know, gosh if -- if -- if my son was diagnosed with something that Charlie Gard had, at the time of the Charlie Gard story, I think I would lose my mind. And you guys both seem happy.

MICHELLE: We lose it all the time.

RUSSELL: Yeah, we do.

MICHELLE: We put -- we put on this brave face. I'm used to putting the brave face on for the specialists because I can't -- you know, when a specialist, doctor is trying to tell me what's going on with my son, you know, I can't be emotional. I have to put on my brave face and say, "Okay. Tell me what I need to do. Tell me what needs to be done to keep him as healthy as possible." So we try.

GLENN: And, Russell, how are you doing it?

RUSSELL: I look at my other three kids and see how they react. And I don't want them to be upset by seeing me upset. So, I mean, it's pretty much the other -- to see how strong he is. He's this -- I mean, he's the strongest person I've ever seen in my life.

MICHELLE: He's our superhero.

RUSSELL: So everything he's been through. And he still puts a smile on his face and laughs. That's how I do it.

MICHELLE: We cry in the shower.

(laughter)

Yeah.

GLENN: Hmm.

What a -- what a great couple. And thanks, strangely, for lifting my spirits. Thanks for making me feel good in talking to you both. We will keep you in our prayers. And please check in with us if there's something that you need or something we can do to help. Please feel free to call. You have our -- you have our -- all of our digits and our email. So you can get a hold of us.

If you would like to get involved and help the family, you can go to youcaring.com. If this just helps you remember, Bubby. B-U-B-B-Y. Bubby.

STU: We tweeted out from @worldofStu. It's up there. We're going to tweet it from @GlennBeck as well.

GLENN: Yep. And we will have it at GlennBeck.com. But please, if you -- if you can, help the family not have to worry about any kind of expenses so that they can do what they have to do. Guys, thank you so much. God bless.

MICHELLE: Thank you.

RUSSELL: Thank you.

GLENN: Isn't that great?

STU: You're right. Their attitude is like so positive. They are putting on a brave face if that is --

GLENN: They said -- you know, there's a difference between putting on a brave face and finding your way to joy.

STU: Hmm.

GLENN: They sound to me like it's not a brave face. It is -- and maybe it was just nervous laughter. Maybe that's what it was. But it seems to me that they have found a way to joy. And, boy, that's hard to do. Hard to do. God bless them.

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