BONUS The Path with Becky Quick: Head of the Class 3/20/26

Summary

Squawk Pod – BONUS The Path with Becky Quick: Head of the Class – March 20, 2026

---

Episode Overview

This deeply moving episode of "The Path" series, hosted by Becky Quick for CNBC Cures, chronicles the extraordinary journey of the Muldoon family and their son, KJ – the first person in the world to receive a personalized CRISPR-based gene editing therapy for a rare genetic disorder called CPS1 deficiency. Through the voices of Nicole and Kyle Muldoon, listeners experience the harrowing uncertainties of rare disease diagnosis, the pioneering medical intervention at Children’s Hospital of Philadelphia (CHOP), and the emotional complexities of hope, risk, and resilience. The episode offers rare insight into the lived realities of rare disease families and trailblazing medical science.

---

Key Discussion Points & Insights

The Unexpected Birth and Diagnosis

• Life-threatening Pregnancy & Emergency Delivery
  • Nicole Muldoon describes a high-risk pregnancy culminating in a life-saving emergency C-section.
  • “I told them, like, my kids need me, my husband needs me. Save us both… I wrote letters in case, but thankfully I woke up and was able to delete all of them.” (Nicole, 04:31)
• KJ’s Immediate Health Crisis
  • Within hours of birth, KJ’s severe symptoms led doctors to suspect a grave issue: his ammonia levels were astoundingly high.
  • "Typical ammonia levels... are between 9 and 33. KJ's was up in the 1600s. So that's why they acted so quickly with the dialysis." (Nicole, 08:39)
• Rare CPS1 Deficiency Revealed
  • Official diagnosis: complete deficiency in CPS1, essential to the urea cycle.
  • “We just hope it's not CPS1 deficiency... we're so sorry, it's a CPS1 deficiency.” (Kyle, 10:17)

Confronting Difficult Choices

• Palliative Care vs. Hope
  • Doctors initially recommend palliative, end-of-life care due to the grim prognosis.
  • “We had to give him an opportunity to fight.” (Kyle, 11:28)
  • “We fought to get him here because we love him, and out of love, we want to give him that opportunity to fight for himself.” (Nicole, 11:47)
• Waiting for a Liver Transplant
  • The only established cure was liver transplant, but KJ wasn’t immediately eligible – he needed to grow, and a donor match was required. (Nicole, 13:27)

The Gene Therapy Breakthrough

• Approached for Pioneering Therapy
  • The CHOP team (Dr. Rebecca Ahrens Nicholas and Dr. Kiran Musunuru) present a personalized gene editing solution.
  • “Kind of far-fetched kind of stuff you hear about on, like, podcasts." (Kyle, 17:49)
• How Base Editing Works
  • Doctors use base editing to change the faulty DNA letter, delivered via lipid nanoparticles, aiming to restore enzyme function in KJ’s liver.
  • “This could revolutionize the way we treat rare disorders for patients who have limited or no other options.” (Nicole, 16:53)
  • Nicole likens it to fixing a typo: “The gene editing basically went into that sentence and input… the missing gene into his sentence or into his liver in the urea cycle.” (Nicole, 21:50)
• Family Deliberation and Decision
  • The Muldoons gather every specialist for a full-team Q&A session, balancing hope against unknown long-term risks.
  • “When we made this decision, I was very gut. But thank God that we have Nicole on our team, dotting every I and crossing every T." (Kyle, 20:50)

The Infusion and Recovery

• Infusion Day & Family Dynamics
  • The Muldoons prepared their three other children as best as possible and created a hospital environment reminiscent of home.
  • “Our oldest had an understanding of what that was… [the younger ones] were just kind of like, oh, KJ is getting a little procedure done today.” (Nicole, 23:45)
• Watching for Signs of Success
  • Early promising indicators were lab numbers (ammonia, labs), not just clinical appearance.
  • “When those tests would come up on the app, we'd be like, oh my God, did you see like this number was this or this number was that.” (Kyle, 26:38)

Bringing KJ Home

• Discharge After 307 Days
  • KJ is released from CHOP with emotional fanfare, family, and community support (including a police escort home).
  • “We spent almost a year in the hospital... we become so accustomed to juggling raising three children and having our fourth in the hospital.” (Kyle, 29:39)
• The Weight of New Normals
  • Both Nicole and Kyle share moments of profound gratitude, persistent anxiety, and the adjustment to life outside the hospital.
  • “Every night before I would go to sleep, and the last thing I did before I went to sleep [was] to call and check in with the nurses... and that was the first time... he's here.” (Nicole, 30:41)

Reflections, Uncertainties, and Hopes

• On the Future with Gene Therapy
  • The therapy is life-changing, but not a cure—all eyes are on KJ’s evolving story, as he’s the first-ever case.
  • “They don’t know. So he is the data… But the biggest tell right now is we take turns with lowering the medication dose that he’s on and upping the protein allowance.” (Nicole, 35:17)
  • “None of that really matters to me because my son is doing all the things he should be doing... so cure or not, what the therapy has made his life significantly better.” (Kyle, 36:07)
• Profound Impact & Broader Message
  • Kyle and Nicole hope KJ’s case paves the way for further research and hope for other families.
  • “Our biggest hope is that he represents the entirety of civilization and how people deserve something as simple as healthcare.” (Kyle, 37:22)
  • “We agreed to the research because we wanted to help other families… so that we could help others.” (Nicole, 38:19)

---

Notable Quotes & Moments (with Timestamps)

On Parental Determination

• “I fought my entire pregnancy to get him here… out of love, we want to give him that opportunity to fight for himself.” – Nicole (11:47)

On Being the First

• “He is the data, which is good.” – Nicole (35:17)
• “Some people will live their entire lives and maybe not make the impact that you made. That’s because you’re a fighter.” – Kyle (36:34)

On the Medical Team's Approach

• “Dr. Aarons Nicholas was telling us these extraordinary things in the most humble way... you just keep doing what you’re doing and let us know, if this comes, we’ll be ready.” – Kyle (17:49)

On Returning Home

• “That was his 307th day in the hospital, and he was finally set free.” – Nicole (29:25)
• “Every night before I would go to sleep... was to call and check in with the nurses... and that was the first time I was like, oh, I don’t have to do this now. He’s here.” – Nicole (30:41)

On the Hope for Others

• “We agreed to the research because we wanted to help other families… never knowing that it would work for kj.” – Nicole (38:19)

---

Key Timestamps

• Intro & KJ’s Early Challenges: 01:03 – 08:39
• Diagnosis and Life-or-Death Decisions: 09:51 – 13:27
• Gene Therapy Introduction & Deliberation: 14:30 – 22:35
• The Infusion Experience: 23:34 – 27:37
• Discharge and Homecoming: 29:12 – 32:14
• Long-term Prospects & Reflections: 35:00 – 38:19
• Closing Reflections & Next Episode Preview: 39:05 – end

---

Episode Tone

Heartfelt, genuine, occasionally humorous amidst adversity, and thoroughly hopeful. The conversation blends clinical facts with powerful emotion, empowering listeners to witness both the scientific and personal sides of rare disease innovation.

---

For Further Support and Resources:
Becky invites listeners to reach out with thoughts or for resources, continuing the mission of building a community for rare disease families.

Next episode: Actress Selma Blair discusses her multiple sclerosis journey.

Transcript

[Narrator/Announcer]

Trading at Schwab is powered by Ameritrade, giving you even more specialized support than ever before, like access to the trade desk. Our team of passionate traders ready to tackle anything from the most complex trading questions to a simple strategy. Gut check. Need assistance? No problem. Get 24. 7 professional answers and live help and access support by phone, email and in platform chat. That's how Schwab is here for you to help you trade brilliantly. Learn [e-mail] trading men are struggling with their mental health at some of the highest rates we've ever seen, but most aren't getting the support they need. And that needs to change. I'm Dr. Guy Winch, your host for season three of the Visibility Gap presented by Cigna Healthcare. This season we're focusing on men's mental health, bringing together real stories and expert insight to explore the pressures men face every day and why opening up can feel so difficult. Join us for the new season wherever you stream your podcasts.

[Nicole Muldoon]

They wanted to initially start talking about comfort care, so end of life care.

[Kyle Muldoon]

We had to give them an opportunity to fight.

[Becky Quick]

What did you think when they brought up the idea of a gene therapy?

[Kyle Muldoon]

Kind of far fetched kind of stuff you hear about on like podcasts.

[Becky Quick]

I'm Becky Quick. This is the Path, a podcast series from cnbc. Cures about the people, the powerful communities and the pioneers of rare disease. Even the smallest pioneers.

[Nicole Muldoon]

Hi. Hi cutie. Yay.

[Becky Quick]

Who are all these people? KJ Muldoon or Baby KJ is the first person in the world to receive a personalized CRISPR based gene editing therapy. He is the whole data set. He's one of a kind and he is a success story of modern medicine. A hopeful sign for any of the 30 million Americans impacted by the thousands of rare diseases and conditions. Rare can mean a lot of things. These conditions can be misdirections in neuropathways, deficits of critical proteins or enzymes, sort of genetic typos, biological chances that impact small patient populations and 95% of rare diseases lack a cure. He looks like such a happy boy born with the Rare genetic deficiency CPS1. KJ was just hours old when it became clear that a severe enzyme deficiency was preventing his liver from working properly. This condition is so rare that it affects just one child out of every 1.3 million babies and most don't survive long enough for a liver transplant, which is the only known cure until KJ received a custom gene editing therapy from doctors at the Children's Hospital of Philadelphia before his first birthday he lost one shoe.

[Kyle Muldoon]

Did he? Yeah, of course.

[Becky Quick]

You want to hold them up?

[Nicole Muldoon]

Put it on.

[Becky Quick]

KJ is incredible and humble for a pioneer. When I spoke to the Muldoon family in Philadelphia, he was just starting to walk.

[Nicole Muldoon]

Hi, I'm Nicole.

[Kyle Muldoon]

And I'm Kyle muldoon. And we're KJ's parents.

[Nicole Muldoon]

TV watching. We had KJ in August of 2024.

[Becky Quick]

Was the pregnancy with KJ like your other pregnancies? No. What happened?

[Nicole Muldoon]

The concern with that pregnancy. It was a very high risk pregnancy was actually with me, and a few different things happened. And we ended up finding maternal fetal medicine at Penn three weeks before KJ decided he was ready to come. I went through emergency C section, because the day he was born, I actually hemorrhaged. So Kyle was at work. I was like, we need to go to the hospital right now. And I had had small hemorrhages three other times leading up to this, but at this point, they were like, he needs to come right now.

[Becky Quick]

And they were worried about your health, not his.

[Nicole Muldoon]

Yeah. There was pretty high percentage of me maybe not making it.

[Becky Quick]

What kind of percentages did they tell you?

[Nicole Muldoon]

Like 80%.

[Becky Quick]

Oh, gosh. And you're a mom with three kids? Yes.

[Nicole Muldoon]

Sorry.

[Becky Quick]

Already?

[Nicole Muldoon]

Yeah. I told them, like, my kids need me, My husband needs me. Save us both. I don't care what you have to take out in order for us to both survive, but my kids all need me to be here. So I planned. We planned. I wrote letters in case, but thankfully I woke up and was able to delete all of them.

[Becky Quick]

You wrote letters to your husband and your sister?

[Nicole Muldoon]

My husband, all of my kids for different milestones, but we were able to. I had them scheduled to send, so as soon as I woke up, I deleted the schedules. And then about eight. Eight hours.

[Kyle Muldoon]

Yeah, it was long.

[Nicole Muldoon]

Eight hours of surgery after KJ left. So KJ was born, and they put

[Kyle Muldoon]

me under, and he went straight into the nicu. And the whole time, like, I'm worried about Nicole and what's going on with her. And they originally told me it was a two hour surgery, and then they eventually brought her over to University of Penn Hospital, where we recover. Yeah, recovery. We kind of like, it was a little bit of a sigh of relief there for about 10 minutes.

[Becky Quick]

Yeah. 10 minutes. You thought you dodged the bullet.

[Kyle Muldoon]

Yeah, yeah.

[Becky Quick]

And then what happened?

[Nicole Muldoon]

I was in IC for a little while, and they said, you know, if all goes well, KJ will be joining you on the women's health floor because he's doing really well. Up here. And Kyle woke up around one o' clock in the morning and was like, they said he was going to come down. I don't know what's. So he went up to the NICU just to check in. And that's when they had him on cpap.

[Kyle Muldoon]

Yeah, they had originally. So that morning they had taken him off the cpap. And that night I went back, you know, early the next morning, went back up there and he was back on the cpap. And you know, they weren't loving his breathing and he didn't take well to the feeds originally. So at first it kind of seemed precautionary. As that day goes on, I think early Saturday morning they came in and they said, like, we have some concern about like almost his movement. So they would like pick his arm up and like, instead of it just like dropping like a normal, you know, one day old wood, it was like shaking.

[Nicole Muldoon]

It was very rigid, very rigid movement.

[Kyle Muldoon]

So they thought it was something neurological. So they originally like had brought up like sepsis or meningitis. So then that day kind of starts like the whole whirlwind of like.

[Nicole Muldoon]

So as they're trying to run tests, I'm still waiting to go be able to see them for no. So they get me ready to go up. Kyle wheels me up to the nicu and that's when the doctor had come in and said, it's not meningitis, it's not sepsis. We think we know what's wrong with him, but we need to act right now and he needs to go next door to chop. To chop, yes. So that started like, okay, yeah.

[Kyle Muldoon]

And those, like, for those who aren't familiar, pen and chop, like share a tunnel system underneath there. And he ended up over here in the middle of the night. He went to like internal radiology and they started kind of telling us that he had a very high level of ammonia in his body. Now we kind of, it's like second the second language to us. But at the time, like, I knew ammonia is like a cleaning product. So when he got over here, they're like, we're gonna have to put him on dialysis and get this ammonia out

[Nicole Muldoon]

of his, out of his body, filter out his blood, clean the blood.

[Becky Quick]

I mean, you're. You're 36 hours into this, you've gone through an eight hour surgery. You're trying to make sure your other three children are cared for in that time period. And you're hearing a lot of terms you've never heard before, things you've never thought about how much did it register with you at that point that this is really bad?

[Nicole Muldoon]

Your typical ammonia levels, or what would be normal is anywhere between the numbers of 9 and 33. Yeah, 9 and 33. And KJ's was up in the 1600s. So that's why they acted so quickly with the dialysis.

[Kyle Muldoon]

People ask, like, how did you, like, pick that up? Or like, you didn't have any choice, like, it's your child's life. And so you're just like, that's the only thing you're worried about, like, is, like, just focusing on, like, what the doctors are telling you and what exactly your options are. And so I definitely knew it was serious right away. I had, like, a. I had a feeling when I went up there that night and he was back on the CPAP machine, I was like, something's not right. And obviously, like, over the next days and weeks, we really kind of sat on the edge of, like, we didn't. We didn't know what was going to happen. So it's very surreal going through that and like, kind of like, you know, you walk outside, grab something to drink or something. Like, people are just operating, you know, with their normal lives. And like, you're, you know, your son's fighting for his life.

[Becky Quick]

Did the doctors tell you what the worst come, worst outcomes could be?

[Nicole Muldoon]

Yeah, we. When he was on. So that he was on the ventilator to give his body a break, to have the machine breathe for him on all these different, you know, medications and IVs, they had come to us with the official, well, to take our genetic testing first.

[Kyle Muldoon]

And they just kept saying, we just

[Nicole Muldoon]

hope it's not CPS one.

[Kyle Muldoon]

We just hope it's not CPS one deficiency. And they finally came and said, you know, we're so sorry, it's a CPS1 deficiency.

[Nicole Muldoon]

And CPS1 is the first step of the urea cycle. And with how rare and how severe his mutation was he. The whole. Because he was missing the first step meant the entire urea cycle wasn't working. So they gave us the diagnosis and gave us a few minutes, a little bit of time to kind of process that. And then we had a family meeting with doctors, a few of the doctors, myself and Kyle, both of our moms, and they kind of gave us all of the options.

[Becky Quick]

How many options did you have at that point?

[Nicole Muldoon]

We had continue. They wanted to initially start talking about comfort care. So end of life care, hospice.

[Kyle Muldoon]

We only know our experience. Yeah, you know, I can Google the numbers on. On the Internet. And they tell me that, you know, the mortality rate is very high and, and all that stuff. But, like, I. We just knew that, like, we had to give him an opportunity to fight.

[Becky Quick]

Yeah.

[Nicole Muldoon]

When they brought this up, I kind. We kind of looked at each other. I was like, you know, I fought my entire pregnancy to get him here, to get him to a point where he was healthy enough to be born, that I made it through. I was like, I don't want to make a decision right now because we don't know what it's going to look like. I said, you know, we fought to get him here because we love him, and out of love, we want to give him that opportunity to fight for himself, but we're also not selfish with that. So if it comes to a point where he has no fight left or he's suffering, then we can readdress this conversation. But I just don't think we were at a place at that point to make that decision so hastily without giving him the chance to fight, to see what he could do. And I'm very thankful that we decided that and we had the conversation. We didn't just agree to, you know, comfort care just because we didn't really know what it was going to look like for him.

[Kyle Muldoon]

There's. There's no good, you know, chart to see how viable of a life your child can live. We were under the. We were under the assumption that we were going to be at the hospital until he got a liver transplant.

[Becky Quick]

And did they say that KJ was a good candidate for a liver transplant or give you any idea about how long that wait might be?

[Nicole Muldoon]

We knew that we wanted him on the transplant list, but we also knew that in order for him to be safely transplanted, we had to get him to a certain weight. And he had a. There was different, like, qualifications for that. We also were entertaining the idea of live donors. So we had a lot of our family was tested to see if they would be a match for him. And unfortunately, we didn't find a perfect match for him with a living donor, but we were just waiting for him to get a little bigger so it was safer and also to find a liver that would be small enough to fit for him. Dr. Aaron's Nicholas. Dr. Rebecca approached us with the idea of the research that she's been doing, and she approached Kyle first. I wasn't at bedside when they had the initial conversation.

[Becky Quick]

More of the path when we come back.

[Sponsor Voice]

Support for today's episode comes from square. If you've ever tapped a pay and thought Whoa, that was fast. It was probably Square. Square is the platform behind the scenes of so many businesses you already love. Whether someone's selling smoothies, cutting hair, fixing bikes, or running a boutique, Square gives them one connected system to take payments, manage inventory, run payroll, send invoices, and track it all from one place. This isn't just a point of sale. Square includes hardware that works in person and on the go, software for managing staff, marketing and customer insights, and banking tools like Square checking to get paid instantly. Square is smart, transparent, and built for the way people actually run their businesses. No contracts, no hidden fees. Right now, you can get up to $200 off Square hardware at square.com go squawk. That's S Q U-A-R-E.com go squawk. Run your business smarter with Square. Get started today.

[Narrator/Announcer]

This episode is brought to you by Schwab Market Update, an original podcast from Charles Schwab. Join host Keith Lansford for this information packed daily market Preview, delivered in 10 minutes or less, including projected stock updates, monetary policy decisions, and key results and statistics that may impact your trading. Download the latest episode and [e-mail] MarketUpdatePodcast or find Schwab Market Update wherever you get your podcasts.

[Nicole Muldoon]

Not every sale happens at the register. Before AT&T business Wireless checking out customers on our mobile POS systems took too long. Basically a staring contest where everyone loses. It's crazy what people will say during an awkward silence. Now transactions are done before the silence takes hold. That means I can focus on the task at hand and make an extra sail or two. Sometimes I do miss the bonding time.

[Narrator/Announcer]

Sometimes AT&T business Wireless Connecting changes everything.

[Becky Quick]

Welcome back. I'm Becky Quick.

[Nicole Muldoon]

But still, they look pretty good. Meaning that our system is working, that we can grow neurons in a dish.

[Becky Quick]

KJ's doctors at CHOP, Rebecca Ahrens Nicholas and Kiran Moosunuru, used a method called base editing to replace the faulty letter in KJ's DNA.

[Nicole Muldoon]

This could revolutionize the way we treat rare disorders for patients who have limited or no other options.

[Kyle Muldoon]

So misspellings in the DNA can cause devastating diseases. With gene editing, we can correct those misspellings and hopefully definitively treat those diseases.

[Becky Quick]

Those doses are packaged as microscopic lipid or fat particles, and they're delivered through an iv. It all happens in the hopes of improving his tiny liver's ability to produce the CPS1 enzyme.

[Nicole Muldoon]

We had practiced for many months or more than a year trying to figure out ways to find personalized gene editing solutions for every patient that walked in the door with a urea cycle disorder at CHOP and through these dress rehearsals, we learned how to do this. And when we met kj, we felt like we were actually able and ready to try to do this for the first time in a patient.

[Becky Quick]

What did you think when they brought up the idea of a gene therapy?

[Kyle Muldoon]

To be honest, I, like, it seemed kind of far fetched. It's kind of stuff you hear about on, like, podcasts, but it was very profound. Dr. Aarons Nicholas was telling us these extraordinary things in the most humble way you expect. When somebody walks in with their life's work and they're trying to explain to you, like, how they could possibly save your child, but they don't sell you on anything. They just kind of give it to you straight. The way she did it was just for me, like, right away, I kind of, like, had this feeling that there was something to it, even though it seemed so far fetched. And I even stopped her because she would say things like, well, I don't want to get your hopes up. And at one point I said, Dr. Rebecca, like, my hopes are on many. Like, if my. If this thing goes sideways, you know, our whole world comes crashing down. Like, that's on me to pick up the pieces. Like, you just keep doing what you're doing and let us know, you know, if this comes, we'll be ready.

[Becky Quick]

And there are risks.

[Nicole Muldoon]

Yeah.

[Becky Quick]

Did you Google it right away?

[Nicole Muldoon]

So he's the first. So we didn't have very much info to go off of for the type of gene editing that they were.

[Becky Quick]

But gene editing itself presents risks. And as a parent, when you, when you Google that, you think, oh, gosh, yeah, there's great potential, great risk.

[Nicole Muldoon]

How do.

[Becky Quick]

How do you figure out is this the right choice for my child?

[Nicole Muldoon]

I kind of talked with Kyle and then came back to the team and asked for a team meeting with every single doctor that works with Katie. So we had a liver team representative, so somebody that works in the trans liver transplant. We had genetics, we had research, nursing. Nursing, nutrition. Any specialists that worked with kj, we asked to be in on this meeting so we could ask all of the questions and get all information at one time. So the night prior to this meeting, I sat down and wrote all kinds of questions that I had, pros and cons, good and bad to all, you know, options. And then we sat and had this long meeting. And as they're talking, I'm just writing and Kyle's, you know, asking different things. And it was interesting. Because no one was trying to sell us either way. Transplant gene editing.

[Kyle Muldoon]

We're a big baseball family. Like, me and Nicole were baseball managers. We'd be totally different. Like, I would take the picture out in the seventh inning because I don't like the way he's wiping his eyebrow. And Nicole would look at every single analytic and be like, he's been through the rotation three times. Like, we got to take him out. When we made this decision, I was very gut. Like, my gut was telling me that this was the right thing. Thank God that we have Nicole on our team, who's, like, dotting every I and crossing every T. But I just think when we sat down and we trusted the people around us and the way they. The way they kind of operated around us made us trust them. And we decided we were going to do the gene editing.

[Becky Quick]

Gene editing is complex. A lot of people hear it. They don't necessarily understand what it means. How'd you get your head around it? Do you have a way you think of it?

[Nicole Muldoon]

So with. With the mutation that he has, if you think about it, like, when you're writing a sentence, say you're typing a sentence on the computer and you misspell a word or you miss a word in the sentence, you're. You go back, you backspace and kind of make that edit or make that change in the sentence and continue. So with his. His body just completely deleted the word. So the gene editing basically went into that sentence and input. It imported the missing gene into his sentence or into his liver in the urea cycle. That's essentially how that worked.

[Becky Quick]

How many people. How many kids have CPS1 deficiencies? How common is it?

[Nicole Muldoon]

KJ's mutation is 1 in 1.3. 1.3 million.

[Becky Quick]

Million.

[Nicole Muldoon]

Yeah.

[Becky Quick]

So it's a small number of people who have this. Of children who have this. Do you think about why they chose you? Did they say why they chose you?

[Kyle Muldoon]

Right place, right song.

[Nicole Muldoon]

Yeah, really.

[Kyle Muldoon]

It's like all. If you think about us ending up at Penn and him having what he has and us just so happening to live in one of the greatest pediatric care cities in the world. Fate, whatever you want to call it, like, it was meant to be. We were meant to be where we were when we were there. And I think we try to never forget that. Right.

[Becky Quick]

You get to the dosing in February. What's it like the night before? What's it like the day of. And how do you talk about this with your other kids, too?

[Nicole Muldoon]

So with the other kids, we kind of. From the very beginning explained to them, you know, that KJ was really sick. He was going to live at the hospital. We incorporated home to the hospital as much as possible. So his room was decorated like as close to what it would look like at home that we could. His siblings were constantly coming to visit and the care teams did a very good job of incorporating his three siblings into, into his life at the hospital as much as possible. So leading up to infusion day, our oldest had an understanding of what that was and what that looked like. And our three and five year old were just kind of like, oh, KJ is getting a little procedure done today. Like they didn't really understand.

[Becky Quick]

Your oldest is 14? Yes. Yeah.

[Nicole Muldoon]

So he obviously understood what was going on and that it was, you know, we didn't really know what was going to happen. But the actual infusion was about four hours and it was us, his nurse, the two doctors that were doing the infusion and then visitors in and out, different people from the hospital.

[Kyle Muldoon]

It was a busy day.

[Becky Quick]

Whirlwind.

[Kyle Muldoon]

Yeah, yeah, yeah. And I remember like being a nervous, nervous wreck. And like we didn't sleep at the hospital that the night before. We slept at home and then like came down in the morning and kind of got there expecting us to be there and then. But everybody was already there.

[Nicole Muldoon]

Yeah.

[Kyle Muldoon]

And I remember the, specifically the two chaplets that we dealt with that work for chop wonderful people. And I'm like a nervous wreck. So I'm just like shooting off at the hip again. Like I walk in and they're there and I'm like, who invited the Jesus doc? And. And everybody laughed. I was like trying to bring like some levity to it because it was definitely like a very tense situation.

[Nicole Muldoon]

He talked non stop.

[Kyle Muldoon]

The tired tower.

[Nicole Muldoon]

I was very focused in on kj so that was. He was asleep. And when he would start to startle, I mean it was like at that up next to him and then at one point I just climbed into his crib and just laid with him.

[Becky Quick]

Did you notice anything or when did you first be. I mean, you had two other infusions. When did you notice, hey, this, this might be a really good thing, might be helping.

[Kyle Muldoon]

I think we knew more because of the numbers.

[Becky Quick]

Yeah, yeah.

[Kyle Muldoon]

He would get tested sometimes daily, then sometimes weekly or you know, for different things. When those tests would come up on the app, on the, on your phone, we'd be like, oh my God, did you see like this number was this or this number was that. We kind of had learned how everything correlated. So as. And then obviously, Dr. Rebecca would say to us, like, hey, this number came back. This is a really good sign. So I think visibly you could see he was, like, getting older and putting weight on or whatever. But we were really paying attention to, like, the numbers of, like, his daily from his labs. And as time was going on, like, things were getting better.

[Becky Quick]

We'll be right back.

[Narrator/Announcer]

Trading at Schwab is powered by Ameritrade, giving you even more specialized support than ever before. Like access to the trade desk. Our team of passionate traders ready to tackle anything from the most complex trading questions to a simple strategy. Gut check. Need assistance? No problem. Get 24. 7 professional answers and live help. And access support by phone, email, and in platform chat. That's how Schwab is here for you to help you trade brilliantly. Learn [e-mail] trading oh, could this vintage

[Nicole Muldoon]

store be any cuter? Right?

[Becky Quick]

And the best part, they accept Discover.

[Nicole Muldoon]

Accept Discover in a little place like this? I don't think so, Jennifer.

[Becky Quick]

Oh, yeah, huh? Discover is accepted where I like to share shop.

[Nicole Muldoon]

Come on, baby. Get with the times. Right?

[Becky Quick]

So we shouldn't get the parachute pants. These are making a comeback, I think. Discover is accepted at 99% of places that take credit cards nationwide, based on

[Kyle Muldoon]

the February 2025 Nielsen report.

[Nicole Muldoon]

Not every sale happens at the register. Before AT&T business Wireless, checking out customers on our mobile POS systems took too long. Basically a staring contest where everyone loses. It's crazy what people will say during an awkward silence. Now transactions are done before the silence takes hold. That means I can focus on the task at hand and make an extra sail or two. Sometimes I do miss the bonding time. Sometimes.

[Narrator/Announcer]

AT&T business Wireless connecting changes everything.

[Becky Quick]

When did they finally release him? Because there's some really great footage of him being released from the hospital. Oh, God.

[Nicole Muldoon]

Wow.

[Kyle Muldoon]

You look so smart, KJ.

[Nicole Muldoon]

Yeah. June 3rd. So that was his 307th day in the hospital, and he was finally set free. He broke out a chop.

[Kyle Muldoon]

Yeah. And we. So I am building the new hospital next door, And all the great people that I work with, like, came over, and some people from our neighborhood, some people from my union got together and got us a police escort home. And so when KJ Walked out, there was a whole line of people, nurses, doctors, guys I work with, you know, clapping them out. And then, you know, get the police escort home. And then we get home and, like, you know, the news is at the house and all that. So. And I think it was just so surreal, you know, we spent almost a year in the hospital and, like, become so accustomed to, like, juggling raising three children and have, you know, having our fours in the hospital and, you know,

[Nicole Muldoon]

trying to keep life as normal as possible for the three at home, but then also being at the hospital as much as possible to make sure he was okay. And he was, you know, get having our full attention, too. I remember the first night home that KJ came home. We were all just, like, sitting on the couch. KJ Was sleeping, and I, like, went to pick up the phone to call the hospital, and I'm like, I don't have to do this, like, because every night before I would go to sleep, the first thing I did when I woke up in the morning and the last thing I did before I went to sleep was to call and check in with the nurses if one of us wasn't staying up there, just to see how his night was going and how he was doing. And that was the first time I was like, oh, I don't have to do this now. He's here.

[Kyle Muldoon]

But he's, like, very curious, but, like, I can't imagine, you know, the first 10 months of your life, you. You're, like, 95% of it was spent in the same exact room. So then, like, he gets out and, like, looks up at the sky, like, I would love to know what was going through his head.

[Becky Quick]

There must have been moments when you thought along the journey, I might lose my son. Kyle, I know you. You had a. A football jersey for him, right? An Eagles jersey. Was it Jalen Hurts?

[Kyle Muldoon]

Yes.

[Becky Quick]

How big is it?

[Nicole Muldoon]

Oh, it's.

[Kyle Muldoon]

What was it, like, zero to three newborn?

[Nicole Muldoon]

Yeah.

[Kyle Muldoon]

Yeah. Like, I bought it. I bought it before I knew it was sick. I just, like, went on the Internet. I was like, this. I mean, it's a rite of passage.

[Nicole Muldoon]

We didn't know we were having a boy. So him, when he was born, as soon as he found out, like, oh, it's a boy, he went and bought some jersey.

[Kyle Muldoon]

I mean, and the girls have jerseys, too. And Shawnee's been. You know, Shawnee's head. He's been to a million Eagles games. He's born. You buy him an Eagles jersey. Yeah. And then there was, like, a lot of times where I didn't know if he was gonna. What? You know, he was gonna wear it especially early on. Early on was, like, very.

[Nicole Muldoon]

Minute to minute.

[Kyle Muldoon]

Yeah. With KJ and that minute to minute battle is, like, something that kind of sticks with you. His first Eagles game was a preseason game, and we couldn't get it on the TV at chop. So I, like, sat with my phone next to, like, his little crib that he was in. And, like, he doesn't know what's going on now, but especially not at the time. But, like, I felt it was important that we did that, I guess, the father and son and. Yeah, you just don't know, like, when you're going through it, you don't know what's going to happen. So you just try to make the best of it. You can.

[Becky Quick]

Did you buy him a bigger Eagles jersey?

[Nicole Muldoon]

He's on his third now.

[Kyle Muldoon]

He's got a couple now.

[Nicole Muldoon]

KJ is our last baby. He was planned to be our last baby, but then during delivery, in order for them to do what they needed to do, part of that long surgery was I had a hysterectomy. They needed to get that out in order for me to be okay. So he was officially the last baby. So all of his first are my lasts, too. And there were times where I was like, I don't know if I was going to be able to see him crawl or walk or even open his eyes, those types of things. Take a breath on his own because he was on the ventilator. So I just tried to be at the hospital as much as possible so I could enjoy every bit of his firsts. And we both did. But there was a few times where different events would happen, and I would just, you know, be grateful for the times that we had, but know that, like, we were at a point where we might not see these other things happen.

[Becky Quick]

I know that this gene therapy isn't a cure, but it's a therapy and it's something that's helping him. What have they told you about what to expect in the future? Or did they know because he's the first?

[Kyle Muldoon]

They don't know.

[Becky Quick]

Yeah.

[Nicole Muldoon]

So he is the data, which is good. And so far, we're seeing, like, we're decreasing medicine and increasing protein intake, and he's tolerating that and he's growing and meeting milestones and doing all of these things. But the biggest tell right now is we take turns with lowering the medication dose that he's on and upping the protein allowance.

[Kyle Muldoon]

I think Dr. Rebecca Aarons Nicholas and Dr. Kira Musunuru are very adamant about letting people know that it's. They hate the word cure.

[Nicole Muldoon]

Yeah.

[Kyle Muldoon]

None of that really matters to me because my son is doing all the things he should be doing or most of the things he should be doing at almost 16 months old. So cure or not like, what the therapy has made his life significantly better. And I think we're only kind of. And who knows, obviously, what the future holds in store, but I think we're kind of, like, only at the tip of the iceberg as far as the results. And I, you know, I totally honor and respect the fact that Chop, as a whole, has kind of said, like, hey, timeout. This isn't a cure. We don't want to use that word. But I think the impact is profound. I kind of, like, can't wait for the day he comes home from school and, like, had a bad day or, like, somebody made fun of the shoes he was wearing or his haircut. I'm like, I'm gonna pull out all the articles and all the videos and show him, like. Like, you haven't. You weren't on this earth for a year, and you made this profound impact. Like, some people will live their entire lives and maybe not make the impact that you made. You know, that's because you're a fighter. And obviously, like, we spoke on how lucky we feel and how blessed that we are. Like, I. My biggest hope. Our biggest hope is that he represents the entirety of civilization and how people deserve, you know, something as simple as health care. And. And I hope that, you know, whoever needs to make decisions, makes the decisions to. To broaden these, you know, to. To spend more money on research and to broaden these therapies and. And to find cures for the rare diseases or cancer or whatever it may be.

[Nicole Muldoon]

I think, too, when we initially agreed to the research before, we knew that he would be the actual recipient for the gene editing. But we initially agreed to the research because we wanted to help other families of your recycle. We never thought the editing would be ready for him, but we wanted to participate in the research so that we could help the other families. And not ever knowing that it would be ready for kj, not ever knowing that it would work for kj. But that's why we agreed to it, because we went through all of this. We wanted to make sure that what we're going through, he could help others.

[Becky Quick]

He is such a happy boy.

[Nicole Muldoon]

Yeah.

[Becky Quick]

And you two are wonderful parents. Thank you. And I want to thank you for the time that you've spent with us today. Thank you. This has been another step on the path. A podcast and video cast series with CNBC Cures. I am not exaggerating when I say that this is the most important work I've done in my journalism and television career here. I'm grateful and overwhelmed by the response and the community that we're starting to build here. My North Star with this project is trying to help other families like mine or maybe like yours. If you're in need of help, resources, guidance, tell me your thoughts in the comments. We will also share links to important resources in our episode Notes My guest next time on the path will be actress Selma Blair. Her shocking diagnosis of multiple sclerosis both changed her life and made it all make sense.

[Nicole Muldoon]

I was lonely.

[Becky Quick]

Yeah, I was a bit confused why

[Nicole Muldoon]

I couldn't stay awake the same way as other people. The lassitude and chronic fatigue which is so common with brain elements, especially as you get older, you know, because it just takes a lot to make up for the difference.

[Becky Quick]

Thank you for listening everybody and thanks to the team at cnbc and we will see you next time.

[Nicole Muldoon]

Time.

[Narrator/Announcer]

This episode is brought to you by Schwab Market Update, an original podcast from Charles Schwab. Join host Keith Lansford for this information packed daily market Preview delivered in 10 minutes or less, including projected stock updates, monetary policy decisions and key results and statistics that may impact your trading. Download the latest episode and [e-mail] Market Update podcast or find Schwab Market Update Wherever you get your podcasts.