> At a Glance
> – Becky Quick has gone public with daughter Kaylie’s diagnosis of SYNGAP1, a rare genetic disorder
> – CNBC is launching CNBC Cares to raise awareness for 30 million Americans living with rare diseases
> – SYNGAP1 causes neurodevelopmental issues, has no cure, and often requires round-the-clock care
> – Why it matters: The initiative aims to connect isolated families, share best practices, and push for research
After six and a half years of silence, Becky Quick says she’s ready to speak. The CNBC anchor tells News Of Los Angeles how her daughter’s rare genetic disorder reshaped her family-and why she’s now building a support network for others walking the same lonely road.
The Hidden Struggle
Quick first sensed something was off when Kaylie was about eight months old. Her eyes would cross; milestones slipped by unnoticed. A developmental assessment and genetic testing eventually revealed SYNGAP1, a mutation that scrambles a single letter of DNA and derails normal brain development.
- De-novo mutation-not inherited from either parent
- Subclinical seizures detected via EEG before age two
- Intensive therapies began immediately: physical, occupational, ABA
Going Public After Years of Silence
For years Quick compartmentalized her TV job from Kaylie’s care. She worried that sharing might complicate medical appointments, therapies, or simply invite judgment.
> Becky Quick explains:
> “When you’re on TV you can’t fall apart. Monday morning always comes, and you’re back on air.”
She changed course after realizing other parents lacked her access to doctors, researchers, and returning phone calls. “If we could connect these communities, we could stop reinventing the wheel,” she says.
CNBC Cares: A New Platform for Rare Diseases
CNBC’s new initiative-CNBC Cares-will spotlight:
- 30 million Americans living with rare diseases
- Latest research, funding gaps, and policy hurdles
- Stories from affected families, scientists, and advocates
Life Today
Kaylie, now 9, attends a special-needs school that ventures into the community weekly-Dunkin’ runs, zoo trips, mall outings. She understands language but struggles to speak; sensory overload can trigger self-injury.
> Quick says:
> “She’s working hard to talk. Overwhelm makes her bite herself or us, but ABA therapy has helped.”
Quick’s Hope
“I want people to see Kaylie and kids like her as just kids who want to belong,” she says. “Awareness breeds acceptance-and maybe a path to a cure.”
Key Takeaways
- Becky Quick kept daughter Kaylie’s SYNGAP1 diagnosis private for six years
- The rare disorder stems from a spontaneous DNA mutation, disrupting brain signals
- CNBC Cares will spotlight 30 million Americans with rare diseases
- Quick now advocates for community, research funding, and public understanding
Her on-air silence has given way to a louder mission: no parent should navigate rare disease alone.
