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

August 08, 2017
 Staff

WRITER

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.

Critical race theory: The revolution of constant whining

Flickr/GaryStevens

Most self-proclaimed Marxists know very little about Marxism. Some of them have all the buzzwords memorized. They talk about the exploits of labor. They talk about the slavery of capitalist society and the alienation caused by capital. They talk about the evils of power and domination.

But they don't actually believe what they say. Or else they wouldn't be such violent hypocrites. And we're not being dramatic when we say "violent."

For them, Marxism is a political tool that they use to degrade and annoy their political enemies.

They don't actually care about the working class.

Another important thing to remember about Marxists is that they talk about how they want to defend the working class, but they don't actually understand the working class. They definitely don't realize that the working class is composed mostly of so many of the people they hate. Because, here's the thing, they don't actually care about the working class. Or the middle class. They wouldn't have the slightest clue how to actually work, not the way we do. For them, work involves ranting about how work and labor are evil.

Ironically, if their communist utopia actually arrived, they would be the first ones against the wall. Because they have nothing to offer except dissent. They have no practical use and no real connection to reality.

Again ironically, they are the ultimate proof of the success of capitalism. The fact that they can freely call for its demise, in tweets that they send from their capitalistic iPhones, is proof that capitalism affords them tremendous luxuries.

Their specialty is complaining. They are fanatics of a religion that is endlessly cynical.

They sneer at Christianity for promising Heaven in exchange for good deeds on earth — which is a terrible description of Christianity, but it's what they actually believe — and at the same time they criticize Christianity for promising a utopia, they give their unconditional devotion to a religion that promises a utopia.

They are fanatics of a religion that is endlessly cynical.

They think capitalism has turned us into machines. Which is a bad interpretation of Marx's concept of the General Intellect, the idea that humans are the ones who create machines, so humans, not God, are the creators.

They think that the only way to achieve the perfect society is by radically changing and even destroying the current society. It's what they mean when they say things about the "status quo" and "hegemony" and the "established order." They believe that the system is broken and the way to fix it is to destroy, destroy, destroy.

Critical race theory actually takes it a step farther. It tells us that the racist system can never be changed. That racism is the original sin that white people can never overcome. Of course, critical race theorists suggest "alternative institutions," but these "alternative institutions" are basically the same as the ones we have now, only less effective and actually racist.

Marx's violent revolution never happened. Or at least it never succeeded. Marx's followers have had to take a different approach. And now, we are living through the Revolution of Constant Whining.

This post is part of a series on critical race theory. Read the full series here.

Will we EVER see justice in the FBI, Trump, Russia investigation?

Americans are losing faith in our justice system and the idea that legal consequences are applied equally — even to powerful elites in office.

Rep. Devin Nunes (R-CA) joined Glenn Beck on the radio program to detail what he believes will come next with the Durham investigation, which hopefully will provide answers to the Obama FBI's alleged attempts to sabotage former President Donald Trump and his campaign years ago.

Rep. Nunes and Glenn assert that we know Trump did NOT collude with Russia, and that several members of the FBI possibly committed huge abuses of power. So, when will we see justice?

Watch the video clip below:


Want more from Glenn Beck?

To enjoy more of Glenn's masterful storytelling, thought-provoking analysis and uncanny ability to make sense of the chaos, subscribe to BlazeTV — the largest multi-platform network of voices who love America, defend the Constitution and live the American dream.

Glenn Beck: Rand Paul was RIGHT to say Dr. Fauci LIED about gain-of-function

The corporate media is doing everything it can to protect Dr. Anthony Fauci after Sen. Rand Paul (R-Ky.) roasted him for allegedly lying to Congress about funding gain-of-function research in Wuhan, China.

During an extremely heated exchange at a Senate hearing on Tuesday, Sen. Paul challenged Dr. Fauci — who, as the director of the National Institute of Allergies and Infectious Diseases, oversees research programs at the National Institute of Health — on whether the NIH funded dangerous gain-of-function research at the Wuhan Institute of Virology.

Dr. Fauci denied the claims, but as Sen. Paul knows, there are documents that prove Dr. Fauci's NIH was funding gain-of-function research in the Wuhan biolab before COVID-19 broke out in China.

On "The Glenn Beck Program," Glenn and Producer Stu Burguiere presented the proof, because Dr. Fauci's shifting defenses don't change the truth.

Watch the video clip below:

Want more from Glenn Beck?

To enjoy more of Glenn's masterful storytelling, thought-provoking analysis and uncanny ability to make sense of the chaos, subscribe to BlazeTV — the largest multi-platform network of voices who love America, defend the Constitution, and live the American dream.

Critical race theory: A special brand of evil

wal_172619/Pixabay

Part of what makes it hard for us to challenge the left is that their beliefs are complicated. We don't mean complicated in a positive way. They aren't complicated the way love is complicated. They're complicated because there's no good explanation for them, no basis in reality.

The left cannot pull their heads out of the clouds. They are stuck on romantic ideas, abstract ideas, universal ideas. They talk in theories. They see the world through ideologies. They cannot divorce themselves from their own academic fixations. And — contrary to what they believe and how they act — it's not because leftists are smarter than the rest of us. And studies have repeatedly shown that leftists are the least happy people in the country. Marx was no different. The Communist Manifesto talks about how the rise of cities "rescued a considerable part of the population from the idiocy of rural life."

Studies have repeatedly shown that leftists are the least happy people in the country.

Instead of admitting that they're pathological hypocrites, they tell us that we're dumb and tell us to educate ourselves. Okay, so we educate ourselves; we return with a coherent argument. Then they say, "Well, you can't actually understand what you just said unless you understand the work of this other obscure Marxist writer. So educate yourselves more."

It's basically the "No True Scotsman" fallacy, the idea that when you point out a flaw in someone's argument, they say, "Well, that's a bad example."

After a while, it becomes obvious that there is no final destination for their bread-crumb trail. Everything they say is based on something that somebody else said, which is based on something somebody else said.

Take critical race theory. We're sure you've noticed by now that it is not evidence-based — at all. It is not, as academics say, a quantitative method. It doesn't use objective facts and data to arrive at conclusions. Probably because most of those conclusions don't have any basis in reality.

Critical race theory is based on feelings. These feelings are based on theories that are also based on feelings.

We wanted to trace the history of critical race theory back to the point where its special brand of evil began. What allowed it to become the toxic, racist monster that it is today?

Later, we'll tell you about some of the snobs who created critical theory, which laid the groundwork for CRT. But if you follow the bread-crumb trail from their ideas, you wind up with Marxism.

For years, the staff has devoted a lot of time to researching Marxism. We have read a lot of Marx and Marxist writing. It's part of our promise to you to be as informed as possible, so that you know where to go for answers; so that you know what to say when your back is up against the wall. What happens when we take the bread-crumb trail back farther, past Marxism? What is it based on?

This is the point where Marxism became Marxism and not just extra-angry socialism.

It's actually based on the work of one of the most important philosophers in human history, a 19th-century German philosopher named Georg Wilhelm Friedrich Hegel.

This is the point where Marxism became Marxism and not just extra-angry socialism. And, as you'll see in just a bit, if we look at Hegel's actual ideas, it's obvious that Marx completely misrepresented them in order to confirm his own fantasies.

So, in a way, that's where the bread-crumb trail ends: With Marx's misrepresentation of an incredibly important, incredibly useful philosophy, a philosophy that's actually pretty conservative.

This post is part of a series on critical race theory. Read the full series here.