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.

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)

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)

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

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.

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.