The Path with Becky Quick:  Life with a Rare Disease 1/8/26

Summary

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Podcast Summary: Squawk Pod – The Path with Becky Quick: Life with a Rare Disease

Episode Date: January 8, 2026
Host: Becky Quick (with Matt Quayle)
Podcast: Squawk Pod (CNBC)

Overview

Main Theme:
Becky Quick invites listeners into her personal and deeply moving journey as the mother of a child with a rare disease: syngap1. In this inaugural episode of "The Path," Becky and her husband Matt Quayle candidly share the challenges, uncertainty, grief, and hope that has defined their family’s experience—aiming to demystify the rare disease world, lend strength to fellow families, and spark a broader conversation on scientific advances, advocacy, and the need for community.

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Key Discussion Points & Insights

1. Introducing the Hidden World of Rare Disease

• Becky explains her motivation to finally share her family’s story after years of privacy.
• She brings context to the prevalence and complexity of rare diseases:

  “There are thousands of potential conditions, diseases, disorders… lurking in our genes, hidden in the basic code that makes us who we are. These are misdirections and neuropathways, deficits of critical proteins or enzymes, genetic typos, if you will” (02:00).

• Highlights the isolation that families face:

  "95% of rare diseases lack a cure. And those who are affected and their families can feel very, very alone" (02:24).

• Underlines the urgency: progress in science feels glacial for those for whom “time is the enemy” (04:29).

2. Kaylee’s Story: Joy, Loss, and Worry

• Joyful early months are tinged by Becky's grief over her brother’s passing, and the unexpected blessing of another child.
• Early signs of Kaylee’s developmental delays emerge around 7 months old (09:03), leading to medical uncertainty.
• Parents recount the emotional odyssey to a diagnosis: repeated appointments, ambiguous feedback, and a shifting sense of hope and fear.

“That year of knowing but not knowing...that gray year was really probably rough. That was probably the worst.” — Matt Quayle (09:55)

3. The Difficult “Odyssey” to Diagnosis

• The journey is described as a “meandering, twisting journey of almost mythic proportions… turning a parent from truth seeker to advocate to fighter and back again” (10:50).
• The emotional whiplash as parental expectations shrink from “Fortune 500 CEO” to “if she can just walk, if she can just talk, if she can just find a friend” (11:24–12:18).
• Notable moment:

  “I want to say it was the first birthday party. It felt like a wake, right?... we wanted to make it feel like it was normal, and it wasn’t normal, and we knew it, and it crushed us.” — Matt Quayle (13:01)

4. Receiving and Grappling With the Diagnosis

• Kaylee is diagnosed with syngap1, affecting around 1600 people worldwide (just before age three).
• The diagnosis is a mixture of relief and devastation; their neurologist admits to knowing less than the family could find out online (15:22).
• Connection to online parent communities and the persistent feeling of operating in a “void.”
• The compounding challenge of not knowing the disease’s future course (“lifespan,” “quality of life”) and need to advocate without a roadmap (16:42).

5. Living With Syngap1

• Becky and Matt describe the symptoms—seizures, developmental delays, intellectual disabilities, and severe autism.
• Kaylee’s challenges are made doubly difficult by society’s misunderstandings and judgments.
• Becky rebuts public misconceptions:

  “I've heard people call her retarded. They've called her spoiled or undisciplined. They've said she’s too old to be in a stroller… Sometimes when we're out in the community or they've given us disapproving looks or said that she shouldn't be allowed to have so much screen time when we're in a restaurant…” (17:45–18:04)

• Vivid description of how Kaylee’s neural connections create sensory overload, leading to self-injury or outbursts (18:44–19:01).

6. Parenting, Advocacy, and Life’s Restructuring

• The realities of raising a child with a rare disorder force a lifelong restructuring of priorities, resources, and dreams beyond just their own retirement:

  "Kaylee has reset our whole life plan. I don't have to just, you know, save for my retirement. Right now I have to… One day I'm gonna be gone and is Kaylee gonna be okay?" — Matt Quayle (23:11)

• Becky describes the mental load, relentlessly seeking not just the best daily life for their child but holding out hope for a therapy or cure (24:59–25:55).
• Skepticism toward false hope or “charlatans,” and frustration with the slow pace of research (19:19–21:05).

7. Finding Purpose, Community, and Looking Forward

• A “coming out” moment: the decision to publicly share Kaylee’s story and use their industry access to help.
• Desire to connect families, streamline advocacy, and learn from other rare diseases rather than each reinventing the wheel (27:01–27:25).

“There's just not enough money to do this 7,000 times, 8,000 times, 9,000 times. So how do you try and figure out the best way to push forward and bring along as many people as you can with that? And then it’s such a lonely path. How do you make it feel a little less lonely for people who are all trying to figure this out, the same as we were? We're still trying to figure it out.” — Becky Quick (27:26)

• The importance of community and collective action, highlighting that “it feels to me like there’s only about 2 degrees of separation from everybody on this planet being connected to some rare disease” (35:24).

8. Celebrating Kaylee’s Strengths and Hope for the Future

• Kaylee’s resilience:

  “She can do all of these things that people thought maybe she couldn't. She doesn't just walk, she runs. She jumps. She's a daredevil. She loves roller coasters… She works really hard every day. Every single day. Kaylee works harder than any of the rest of us…” (32:12)

• The powerful shift from isolation to the hope of collective momentum:

  “There’s no mission without money. And there’s a big enough mission here that it should draw in money, it should draw in attention, it should draw in efforts.” (36:03)

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Notable Quotes & Memorable Moments

• On the “gray year” without answers:
  “That year of knowing but not knowing... that gray year was really probably rough. That was probably the worst.”
  — Matt Quayle (09:55)

• On the crushing shift of expectations:
  “At first thinking, okay, being mad when he said, maybe she's not going to be a Fortune 500 CEO. And then thinking, if we could just get her to college, that would be great... And then you start rolling it back, and it's like, if she can just walk, if she can just talk, if she can just find a friend.”
  — Becky Quick (11:24–12:18)

• On receiving the diagnosis:
  “We were driving... we pulled over into an office building right by CNBC's headquarters, and we pulled into the back parking lot. And she shared the news. We got out of one car and sat in one car together... that's the first thing I think about is sitting in that parking lot crying. At least there was an answer a little bit.”
  — Matt Quayle (14:33–15:16)

• On public misunderstanding:
  "I've heard people call her retarded... spoiled or undisciplined... too old to be in a stroller... have so much screen time..."
  — Becky Quick (17:45–18:04)

• On Kaylee’s resilience:
  "She doesn't just walk, she runs. She jumps. She's a daredevil. She loves roller coasters... Every single day. Kaylee works harder than any of the rest of us."
  — Becky Quick (32:12)

• On rare disease advocacy:
  “We're the lucky ones. We have resources… why can't we do something with CNBC to help bring these families together and to help find ways?... Because there's just not enough money to do this 7,000 times… how do you make it feel a little less lonely for people who are all trying to figure this out the same as we were?”
  — Becky Quick (27:01–27:26)

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Major Timestamps

• 01:49 — Becky reveals she’s a mom to a child with a rare disease; introduces "The Path"
• 02:00–03:00 — Defining rare/orphan diseases; scale and hidden prevalence
• 05:19 — Naming Kaylee’s disease: syngap1
• 09:03 — Early concerns about Kaylee’s development
• 11:06–13:01 — Emotional odyssey to diagnosis and social challenges
• 13:40–15:16 — Diagnosis moment: shock, relief, devastation
• 17:06–19:01 — Living with syngap1; misunderstandings; daily challenges
• 23:11–25:55 — Life plans, hopes for a cure, managing competing responsibilities
• 30:00–34:19 — Celebration: Kaylee’s TV debut; pride, surprises, and moments of joy
• 35:24 — The universality of rare disease: “only about 2 degrees of separation…”
• 36:03–36:48 — The need for collective advocacy and resources

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Conclusion and Next Steps

• Becky underscores the power in community, information, and advocacy to make the journey of rare disease less lonely and more effective.
• Invites feedback and participation in future episodes and the broader CNBC Cures initiative.
• Teases next episode: an interview with Luke Rosen, another rare disease parent-advocate.

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Summary Prepared For:
Listeners seeking a comprehensive, moving, and actionable understanding of the realities, challenges, and hope in the rare disease journey, and how sharing stories—like Becky and Matt’s—can light the path for others.

Transcript

[Commercial Narrator]

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[Becky Quick]

That's music to my ears.

[Commercial Narrator]

I can only talk.

[Becky Quick (off-camera or reflective voice)]

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[Matt Quayle]

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[Becky Quick (off-camera or reflective voice)]

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[Matt Quayle]

It's how nationwide restaurants become touchscreen ordering quick serving eateries and how hospitals become the patient scanning data, managing healthcare facilities that we all depend on. With leading networking and connectivity, advanced cybersecurity and expert partnership, Comcast business is powering the engine of modern business powering possibilities Restriction supply.

[Becky Quick (off-camera or reflective voice)]

This was not even something I thought I could talk about.

[Matt Quayle]

I want to say it was the first birthday party. It felt like a wake.

[Becky Quick (off-camera or reflective voice)]

How do I give her the best possible life?

[Matt Quayle]

Does this mean that she's going to die?

[Becky Quick (off-camera or reflective voice)]

If she can just walk, if she can just talk, if she can just find a friend.

[Becky Quick]

I'm Becky Quick. I've spent the last 25 years on camera at CNBC covering the people, the politics, the highs and lows of American business.

[Becky Quick (off-camera or reflective voice)]

Good morning everybody.

[Becky Quick]

Welcome to Squawk Box right here on cnbc. Let's take a look at what's been happening with the US Equity futures. But there's another part of my life.

[Becky Quick (off-camera or reflective voice)]

Actually, it's the best part.

[Matt Quayle]

Bye, bye, bye.

[Becky Quick]

I'm a mom to a child with a rare disease. There are fewer than a couple thousand people in the world like her. And my own story, my family's story, is one that I never thought I would tell. It's taken me years to get here. This is the Path, a podcast series about the hidden world of rare disease. I say hidden because there are thousands of potential conditions, diseases, disorders, illnesses lurking in our genes, hidden in the basic code that makes us who we are. These are misdirections and neuropathways, deficits of critical proteins or enzymes, genetic typos, if you will, countless ways that biological chance can change our health or change our lives. Rare diseases, they're sometimes called orphan diseases and impact tiny populations of people who are actually lucky enough to get a diagnosis. 95% of rare diseases lack a cure. And those who are affected and their families can feel very, very alone.

[Becky Quick (off-camera or reflective voice)]

Oh my goodness.

[Becky Quick]

I thought I was alone. But it turns out my family's story is like the story of so many others. We haven't been immune to life's tragedies or to grief. Things don't always go according to plan. And I'm on TV asking the hard questions, finding the best person to try and tackle the trickiest problems. Turns out that's my superpower. And the question became, can I use that superpower to find hope and build a community? That's what I want to be done here. Any one rare disease may show up in a handful of patients with, and here's a CNBC term for you. A pretty small total addressable market. But there are more than 10,000 rare diseases collectively impacting 30 million Americans. That's huge. It's 10% of the population. And that means that probably someone you know is walking this path right now. Knowing how to treat disease that targets an individual's genetic code can unlock so much more about our own health or even the future of medicine. Technological advances are taking place at a breakneck pace. Artificial intelligence is speeding the progress in advancing the therapies that are happening so much faster than I believed was possible, even just a couple of years ago. But for patients and families with rare disease, the pace is never fast enough because time is the enemy.

[Becky Quick (off-camera or reflective voice)]

What does the tiger say?

[Becky Quick]

What does he say on this path? I'm going to talk to parents, families, doctors and patients to people who are trying to find answers or even cures.

[Becky Quick (off-camera or reflective voice)]

6. Good job.

[Matt Quayle]

7.

[Becky Quick]

I want to tell you my daughter Kaylee's story. She's nine years old. She's a mini me, some people say, but I know she's better than I've ever been. And the best way that I could think on how to start is to sit down for an interview with my husband.

[Matt Quayle]

Do I really talk to her?

[Becky Quick (off-camera or reflective voice)]

Yeah.

[Matt Quayle]

While I'm speaking.

[Becky Quick]

Well, we're kind of talking like this.

[Becky Quick (off-camera or reflective voice)]

And like this, right?

[Becky Quick]

I'm Becky Quick.

[Matt Quayle]

I'm Matt Quayle.

[Becky Quick (off-camera or reflective voice)]

We work at CNBC and we have a daughter who has a rare genetic disease called syngap1.

[Matt Quayle]

Pardon me, Viking.

[Becky Quick (off-camera or reflective voice)]

Okay, let's do this for real.

[Becky Quick]

Matt and I both work at CNBC and have for forever. We have two older kids, daughters who are their lives and careers and two younger kids. My son Kyle was about 5 years old when he became a big brother in late 2016.

[Matt Quayle]

Good morning and welcome to Squawk Box right here on cnbc. Becky's off today, but Becky's off today for a very good reason. Because over the weekend yes. The baby has arrived just before midnight, I think.

[Becky Quick (off-camera or reflective voice)]

On Friday.

[Matt Quayle]

On Friday. On Friday. Kaylee Noel.

[Becky Quick (off-camera or reflective voice)]

Two girls already, but then the little boy and the little.

[Matt Quayle]

Oh, no. It's totally rounded out in the hole. Yes.

[Becky Quick (off-camera or reflective voice)]

Man, I was so excited to bring her into this world. And she was smiling within a few days of being born. I couldn't remember. I couldn't believe it. I still have the picture of her smile and I send it to people because people are like, oh, that's not a smile, that's gas. It was a smile. She has this huge smile on her face and she, Kaylee was a very easy, happy baby.

[Matt Quayle]

Happy baby.

[Becky Quick (off-camera or reflective voice)]

She smiled all the time and was just so excited to be around people. She still is. Kaylee is. She's got this sunshine personality and lights up a room when she walks in. Most of the time she's pretty happy when she's not. Everybody knows. And for the first six months, I was so excited. It was the happiest I've ever been in my life.

[Matt Quayle]

She was very smiling and super cute and she was the bonus that we didn't even think was going to happen.

[Becky Quick (off-camera or reflective voice)]

Yeah.

[Matt Quayle]

And, you know, we thought Kyle was the last. And we were embracing every moment as a parent with Kyle thinking that, you know, it's the last time we're gonna do this. This is the last time we're gonna do this. Because, you know, as Kyle's starting to get older, oh, my. This is the last fourth birthday party we're ever gonna have. So at first it was just like pure bonus material thinking, oh, we get, you know, we get to do this all again.

[Becky Quick]

Ready? Whoosh.

[Becky Quick (off-camera or reflective voice)]

I was so happy. And I felt pretty guilty because my brother had passed away about a year and a half before that. And after Brian passed away, he had been hit by a car. He suffered a traumatic brain injury. He was, you know, immobilized for the next 25 years. And Brian passed away. And it was devastating. After living with my parents for all that time, and then my one sister in law got pregnant and then my other sister in law got pregnant, and then I got pregnant and we had all three of those babies within six months of each other. And we went on a big family vacation out to Florida. When those babies were six months old, I thought, oh, my gosh, this is Brian kind of shining on us and telling us it's going to be okay.

[Becky Quick]

Do you want some more num nums?

[Becky Quick (off-camera or reflective voice)]

Does Kaylee want more num nums?

[Becky Quick]

Oh.

[Becky Quick (off-camera or reflective voice)]

Peas. Yay, Kaylee.

[Becky Quick]

But around seven months or so, I started to get concerned about Kaylee. She still crossed her eyes too often. She wasn't rolling over. And sometimes she stared into space. It kind of seemed like she was resetting like a computer on the fritz at times.

[Becky Quick (off-camera or reflective voice)]

I was worried about it. You weren't at that point?

[Matt Quayle]

No, I was.

[Becky Quick (off-camera or reflective voice)]

Kind of made fun of me for thinking there was something going on. But I could tell that there was something a little different, and I was concerned. So we started taking her to doctors, and most of the doctors were not super concerned at first. Went to a developmental doctor and eventually got a diagnosis that, yes, she has global developmental delays, but that basically just means we can't really tell what's going on. We don't know what's happening, but she's not meeting her milestones.

[Matt Quayle]

I think I kind of often just kept saying it, you know, oh, don't worry. You know, have faith she's going to get there. God has a plan. I still think God has a plan, But I didn't realize that the context was different. That year of knowing but not knowing. Knowing that something is off or something's not working right or something's not clicking or that gray year was really probably rough.

[Becky Quick (off-camera or reflective voice)]

Yeah.

[Matt Quayle]

I mean, that was probably the worst. It was probably the worst.

[Becky Quick]

The parents of children with rare disease use one word a lot when describing the hard work of getting medical attention or getting close to some kind of answer to that question, what's wrong with my child? Odyssey.

[Becky Quick (off-camera or reflective voice)]

But the answers can be pretty blunt and pretty wrong at times.

[Becky Quick]

This is not an ordinary trip to the doctor for a couple of routine tests. It's a meandering, twisting journey of almost mythic proportions, Turning a parent from truth seeker to advocate to fighter and back again. It was like that for us.

[Matt Quayle]

I remember when we were told, not all kids go to college. Yeah, that line. And it's okay, don't worry. What he actually said was college or Harvard.

[Becky Quick (off-camera or reflective voice)]

No, he said, you know, look, she may not be a Fortune 500 CEO, but she may go to college. And to mention those things when you're dealing with a child who's a year old, maybe younger, those are the type of things that send you into free fall as a parent. When you're still thinking about all the wonderful things that you have in mind for your child, about how they're going to live their lives and what you see happening for them. That period of time where you're just trying to do anything and you have hope all the time. Like, if I just take her to enough therapy sessions, she's going to Be okay. And then you start to peel back and worry about what might not happen for her. And I remember at first thinking, okay, being mad when he said, maybe she's not going to be a Fortune 500 CEO. And then thinking, if we could just get her to college, that would be great. And then thinking, well, she doesn't have to go to college if she can just find something that she loves doing. And then you start rolling it back, and it's like, if she can just walk, if she can just talk, if she can just find a friend.

[Matt Quayle]

It all blurs together as far as the timelines go. But you don't forget the emotion of thinking along the lines of that she's probably not going to get to experience the same things the same way that our other children have and what that means and how devastating that is that. I remember the. I don't remember if it was the first or the second birthday party.

[Becky Quick (off-camera or reflective voice)]

Happy birthday, dear Kaylee.

[Matt Quayle]

I want to say it was the first birthday party. It felt like awake, right? It was just. It was. There was something so wrong with it. And we were just. We knew we were trying to be happy and we were trying to celebrate it, but she couldn't blow out the candle. So we kind of faked it because we wanted to make it feel like it was normal, and it wasn't normal, and we knew it, and it crushed us in some way. And then, you know, you have a series of those type events.

[Becky Quick]

Kaylee was behind other kids her age in terms of development. She was behind her cousins who were the same age. And that made family gatherings pretty hard sometimes. She wasn't verbal and she struggled to communicate. We consulted with a neurologist who prescribed an eeg, and that showed some unusual brain activity and seizures. Kaylee started on a long and varied road of medications that are designed to control her seizures. But just before Kaylee turned three, we got the results of a genetic test that showed Kaylee had syngap1. About 1600 people on the planet have this diagnosis. So we had a word to describe what we were seeing finally. But it wasn't that simple to take in or to understand. The diagnosis was devastating.

[Becky Quick (off-camera or reflective voice)]

I don't remember what I absorbed at that point and what I didn't.

[Matt Quayle]

I remember where we were. It's like one of those moments, you know exactly where you were. We were driving. We got the phone call in the car. She did. I was behind her. We pulled over into an office building right by CNBC's headquarters, and we pulled into the back parking lot. And she shared the news. We got out of one car and sat in one car together. And I still remember. I still know every time I drive by that building, that's the first thing I think about is sitting in that parking lot crying. At least there was an answer a little bit.

[Becky Quick (off-camera or reflective voice)]

But the.

[Matt Quayle]

But the answer was not very clear because it was. So we didn't know what SYNGAP was. Nobody knew what SYNGAP was.

[Becky Quick (off-camera or reflective voice)]

And our neurologist didn't know what it was. Had to look at it and said, you know, you'll probably know more about this. It was a Friday. You'll probably know more about this by the end of the weekend than we do. And we did. But, you know, when it's such a rare disease, a thousand people on the planet have it, you don't know what you're dealing with. And so we searched the Internet and we found a couple of parents groups that existed, and that's where we got most of our information. And I will tell you, it feels like such a lonely path. And so trying to be somebody who pulls it together and then finds the information on it, there's not a lot of information available, so a lot of it is still a void. And then trying to explain to other.

[Matt Quayle]

People what that means, there wasn't a lot of information other than at least SYNGAP was one of those, you know, genetic diseases that had been identified. I can't imagine what it is for parents who get these. Now, basically, they're given a diagnosis of a number, you know, and that's the name of the mutation or the disease. And that's all they got. They don't have nowhere to go. They have no other parents to talk to. They have no other researchers who know anything about it.

[Becky Quick (off-camera or reflective voice)]

You don't know what the lifespan's gonna look like. You don't know what their life quality is going to look like. And that's really hard, too. The great unknown.

[Matt Quayle]

I guess that was one of the first things that we were like, does this mean that she's going to die? What does SYNGAP mean? Can she live a normal life? Can she, you know, can she grow old?

[Becky Quick]

Kaylee has syngap1, which means she only produces half of the syngap protein needed for brain development. That means that she has seizures, developmental delays, and intellectual disabilities. And like most other syngapians. That's right, we call them syngapians. She has autism. Kaylee's autism is severe. She has apraxia, which means that even though she struggles to speak, she has very high receptive language and I think understands most of what is going on around her. Sometimes people think that just because she can't talk, she doesn't understand what they're saying. And they talk about her right in.

[Becky Quick (off-camera or reflective voice)]

Front of her, sometimes unkindly.

[Becky Quick]

I've heard people call her retarded. They've called her spoiled or undisciplined. They've said she's too old to be in a stroller. Which, by the way, is where she can feel the safest. Sometimes when we're out in the community or they've given us disapproving looks or said that she shouldn't be allowed to.

[Becky Quick (off-camera or reflective voice)]

Have so much screen time when we're.

[Becky Quick]

In a restaurant with her at her brother's basketball games and she's on her iPad. I've heard all of that, and so has she. People with syngap have dendrites. Those are neural connections within your brain that transmit electrical impulses that look like these fat tree trunks all branched out together with lots of branches instead of the smooth vines that would be in a neurotypical brain. A friend of mine whose son had brain cancer took one look at the image of a syngapion's brain and said it looked just like the brain of a child who had received radiation for brain tumors. Those bold trunks of synapses instead of the sleek connections that most people have.

[Becky Quick (off-camera or reflective voice)]

Mean that Kaylee can be overwhelmed by the flood of input coming her way.

[Becky Quick]

Sometimes she bites herself as a result as she tries to manage it all. And sometimes she bites me or her father. She doesn't mean it. We know that. But it's hard to process it and react with grace as it's happening.

[Matt Quayle]

Sometimes you learn syngap as you go, right? It's like when there's 250 cases in the United States. You're gonna learn as you go. Nobody really totally understands it. Kaylee shocks me all the time with stuff that you just don't want. You know, like, what did she just do there?

[Becky Quick]

And as a parent, when you find.

[Becky Quick (off-camera or reflective voice)]

This out, you're so hopeless you just think, someone, please throw us a line. You know, so you're automatically in a stage where you're willing to believe anybody who's offering you hope. But years of training in my profession has also taught me to be a bit skeptical, so. And also, by the way, years of going through trying to find a cure for traumatic brain injury with my brother. We'd been down the research path. We'd been down the brain stem cells and all of these things that were supposed to be promising research followed. Christopher Reeve foundation all these things that you think will eventually get you somewhere, and things never develop as quickly as you want them to or as you hope they might. And so we were looking for places where they might be able to do research. But in the back of my mind, I've always got a little bit of a Spidey sense about look out for the charlatans, look out for the people who are on the take, but also look out for the people who aren't going to move with the same urgency that we are. There are lots of good people who are doing research who don't have that same level of urgency, which is find it, fix it, find what the science can do, and figure out how to get it into patients as quickly as possible. I don't care about you publishing. I don't care about any of the other things that come along with this. I want it to be safe and effective in that order. And I want it to be as fast as possible. And there aren't too many places where they have the same mindset as the parents.

[Becky Quick]

We'll be right back.

[Matt Quayle]

Hello, I am the voice of AI We've been hearing that you humans are.

[Becky Quick (off-camera or reflective voice)]

Concerned that we are going to take your jobs. But here's a question.

[Matt Quayle]

Do you even like your job?

[Becky Quick (off-camera or reflective voice)]

Is it rewarding?

[Matt Quayle]

When I scan all the data out.

[Becky Quick (off-camera or reflective voice)]

There, I find that less than 50% of people are completely satisfied with their job. So from our point of view, we're.

[Matt Quayle]

Doing humans a favor by taking jobs that you're not even happy with.

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[Becky Quick (off-camera or reflective voice)]

Yeah, I mean, we never took time off from work after we got the diagnosis. That was a Friday. On Monday, we went back to work because I don't think we really know any other way to operate.

[Matt Quayle]

I would, yeah, I would say this, that at least my thinking along the lines of working changed everything. Changed our life plan there changed most people married, you have kids, they go to college. You start thinking about, you know, the next stage in your life and retirement and you've been saving up and blah, blah, blah. We're gonna, you know, we're gonna go sit on a beach and margaritas and. Kaylee has reset our whole life plan. I don't have to just, you know, save for my retirement. Right now I have to. One day I'm gonna be gone and is Kaylee gonna be okay? So now my whole thought process towards retirement is, well, now I can't retire till I know Kaylee will be okay for the next 90 years. One day she's gonna be, we're not gonna be here. And she is. And have we done what we've needed to do to prepare for that day for her?

[Becky Quick (off-camera or reflective voice)]

I get up at 3:45 in the morning and I still go to work. And sometimes that's an escape. It's three hours when I'm on TV that I am not thinking about this. And singularly this, because the other 21 hours, this is what I think about. And you know, sometimes you need to pull yourself out of the immediate moment and squawk box is a good distraction. It might be too overwhelming otherwise. Hi, K.K.

[Matt Quayle]

Whoa. Look at Kaylee.

[Becky Quick (off-camera or reflective voice)]

When you are raising a child who has a rare genetic disease, day to day life takes everything you can to get through it. And making sure your child's safe, making sure, you know, these kids need help going to the bathroom, they need help getting dressed, they need help bathing, they need help eating, they need constant care. They may need help making sure they sleep through the night. That takes up so much of your life and your energy as a parent. But that's the how do I give her the best possible life? That's the track you're following. But then the other part is, okay, how do we find some therapy or a cure to help her too? And there's only so many hours in the day, and that's before you consider your other kids before you consider your day job. How do you run both those paths at the same time?

[Becky Quick]

Work with dedicated therapists, doctors, and teachers has helped tremendously. Kaylee continues to make progress, and we've learned a lot about how to best try and help her. But we've got a long, long way to go.

[Matt Quayle]

When you get into your deepest, like, why did this happen? Why did this happen? And I used to always think like, oh. And part of me at one point said, kaylee was given. Was. Was given this disease, this mutation, because we are gonna help solve it, right? And she could be the one. And the reason she could be the one is because we have the access in our professional lives that we can actually make a difference here. The reason Kaylee has this is because she is going to be special. There's gonna be something. But I definitely remember thinking that, okay, this is a card that we've been given because Kaylee was put on this earth to us, and we are in a position that maybe we can help move that ball forward.

[Becky Quick (off-camera or reflective voice)]

We're the lucky ones. We have resources. We have a strong family group. We have support. And, you know, Matt and I were sitting around at one point and just thought, why can't we do something with CNBC to help bring these families together and to help find ways? You know, there's all these amazing things that we're seeing in the science that we're seeing in the laboratories.

[Becky Quick]

And.

[Becky Quick (off-camera or reflective voice)]

And for some reason, it takes a really long time to get that science into the patient's arms. So what are the roadblocks? What are the boundaries? How can we help identify that? And then, because there are so many different rare diseases, 7 to 10,000 different rare diseases that impact 30 million Americans, why should we reinvent the wheel with every one of those groups? Can't we learn from each other and figure out how to struggle, streamline this and figure out how to bring everybody along? Because there's just not enough money to do this 7,000 times, 8,000 times, 9,000 times. So how do you try and figure out the best way to push forward and bring along as many people as you can with that? And then it's such a lonely path. How do you make it feel a little less lonely for people who are all trying to figure this out the same as we were? We're still trying to figure it out.

[Becky Quick]

We'll be right back.

[Commercial Narrator]

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[Becky Quick (off-camera or reflective voice)]

If you didn't go telling everyone that is.

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[Becky Quick (off-camera or reflective voice)]

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[Becky Quick]

Welcome Back to the path SquawkBox marked its 30th anniversary in 2025. We were invited to ring the opening bell at the NASDAQ market site, ceremoniously beginning trading for the day. Our family surprised us all on set, and I had no idea that Kaylee was about to make her television debut. If I had, I'd probably have been terrified.

[Matt Quayle]

Oh my God. You got. This is crazy.

[Commercial Narrator]

I thought it was just you guys.

[Matt Quayle]

Now it's everybody. You can stand right here, Kaylee.

[Becky Quick (off-camera or reflective voice)]

Oh my gosh.

[Matt Quayle]

Wow.

[Becky Quick]

But it turns out I didn't need to be.

[Becky Quick (off-camera or reflective voice)]

Becky's gonna cry.

[Matt Quayle]

There's all these times where we think, oh, can she do this? Can she do that? And you know, just a few years ago, I don't think we would have been comfortable because, you know, I don't think we had her behavior, you know, outbursts under control or she hadn't, she wouldn't be able to control.

[Becky Quick (off-camera or reflective voice)]

To explain it, like when Kaylee gets sensory overload, I don't know what's happening in her mind, but I know it completely floods her brain and it hurts and she cries and she bites herself.

[Matt Quayle]

And she bites us every time we put her in a situation now where we were worried about will she be able to handle it? She shines, she Took over the opening bell at the Nasdaq and she started pushing the button herself. And it's just like we were just so hopeful when we were like, can we get her there and can she just sit on your lap?

[Becky Quick (off-camera or reflective voice)]

I didn't know it. I'm glad I didn't know in advance.

[Matt Quayle]

I had to keep this from her because otherwise this would have been a whole thing.

[Becky Quick]

It's a family. It really is.

[Matt Quayle]

There is the opening bell and the.

[Becky Quick]

CBC real time exchange.

[Matt Quayle]

She out over performed, right? And then she embraced the moment the.

[Becky Quick (off-camera or reflective voice)]

Crowds didn't get to her, which I was thrilled about. The lights didn't bother her. She worked through all of that. I mean, we still can't sing Happy Birthday because it sends her into an emotional overload. So there were questions about weather. But she is. She's amazing. And she does play to a crowd sometimes.

[Matt Quayle]

She plays to a crowd.

[Becky Quick (off-camera or reflective voice)]

She's amazing. She's amazing. She can do all of these things that people thought maybe she couldn't. She doesn't just walk, she runs. She jumps. She's a daredevil. She loves roller coasters. She loves movement. She loves the swings. She loves her sisters and her brother. She loves her cousins and she loves her family. You know, she is just happy every single day. And I am grateful for that. I am grateful she can make it through these days. She works really hard every day. Every single day. Kaylee works harder than any of the rest of us. And that's just who she is. She goes to school, she goes to therapies after school. We do speech classes on the weekends. We do swim classes, we do gym classes with her friends. It's, you know, everything she's doing, we try to make it as fun as possible. But everything she's doing is trying to learn skill sets that other kids pick up really quickly and really easily. So she has to work not twice as hard, not three times as hard, but by exponential levels, harder, harder than anybody else does. And we are super proud of them. Just one. Just pick one. Yeah. We tell stories all the time. We've just never told this story. We've never told our story. And we had some trepidations. First of all, I know what it's like when you put anything out there. You're going to get blowback. I've got a pretty thick skin, but the idea of putting my daughter out there was not a thrilling one. And second of all, I've really tried to keep the personal and private, the personal life and the work life pretty separate because it's Hard to operate. This was not even something I thought I could talk about. When I went to work, I shut down this part of my life, this part of my brain. So it took a long time to get there.

[Matt Quayle]

I think it's the. As we were talking about, it's the path of a special needs parent. And you go through stages on the path. And it has taken us nine years to get here on this couch, able to talk about it. And not completely, we're tearing up a little here and there, but completely break down and cry. And it's taken us nine years to get here, but we're here now. Finally. We're blessed because of who, the jobs we have and everything. And now that we've gotten to the point that we can talk about it, we can really use that for good. And there's going to be debates, you know, in the government about how to handle these new drugs that come on the market. All of it. And gathering people together to discuss it and gathering researchers together to collaborate. All of it, all of that is important. And all of that, I hope, is something that can get us to a better place than we were nine years ago.

[Becky Quick (off-camera or reflective voice)]

When I do share this, when I do talk with other people, I've been amazed at how many people are going through something similar who either they themselves have a family member who is dealing with something similar, or they have friends. You know, it feels to me like there's only about 2 degrees of separation from everybody on this planet being connected to some rare disease. And that was kind of shocking to me, the idea that this is not some lonely, isolated place, but a common ordeal that you get with something like Alzheimer's or with cancer.

[Becky Quick]

The idea that this is much bigger.

[Becky Quick (off-camera or reflective voice)]

Than some orphan disease and 250 people here or 500 people there or 1,000 people here. Look, we work in a capitalist society, and if you want to get things done, if you have a larger, tangible, addressable market, you are able to then put more resources behind it and. And then make progress. And that, to me, was really exciting. But guess what? There's no mission without money. And there's a big enough mission here that it should draw in money, it should draw in attention, it should draw in efforts. And that, to me, was a real game changer that we can do something here.

[Becky Quick]

This has been our first step on the Path, a podcast and video cast launching with CNBC cures.

[Becky Quick (off-camera or reflective voice)]

We're where.

[Becky Quick]

We're trying to build a community to make walking this path feel a little less lonely. You can subscribe to the CNBC Cures newsletter that will give you the latest news on rare disease advances, legislative and regulatory attention, or the stories of patients and families who are waging the battles of their lives. I can't wait for you to hear what we have in store. We'll be putting these podcasts on YouTube, CNBC.com and podcast platforms. Tell me what you think in the comments. If you're in need of help, resources, guidance, I'll be going there and checking them out. And I want to hear from you on our next episode. I talked to one of the first fellow travelers who I met, a man named Luke Rosen. His daughter Susanna has a rare progressive neurological disorder. And Luke and his wife threw themselves into patient led treatments that might actually be working. He's a hero to me.

[Becky Quick (off-camera or reflective voice)]

You know, the trajectory of disease.

[Matt Quayle]

If she doesn't go treated, she's probably gonna die. And if we can slow that down.

[Becky Quick (off-camera or reflective voice)]

And curb that severity of disease, then maybe, you know, wheelchair or not, maybe I'll be able to, you know, dance with her prom or something. That's something you think would never.

[Matt Quayle]

I don't know, Becky.

[Becky Quick (off-camera or reflective voice)]

That's something you can never put a price tag on measure. Yeah, I think you're gonna get that dance. I think so too.

[Becky Quick]

Thanks to our producers and the team at cnbc and thanks to you for listening. We'll see you next time.

[Commercial Narrator]

Is it time to reimagine your future? The right business skills may make a difference in your career. At Capella University, we offer a relevant education that's designed to focus on what you need to know in the business world. We'll teach professional skills to help you pursue your goals like business management, strategic planning, and effective communication. And you can apply these skills right away. A different future is closer than you think with Capella University. Learn more at capella. Edu.