Becky Quick, the co-anchor of CNBC’s Squawk Box, has opened up publicly for the first time about her daughter Kaylie’s health journey, revealing her daughter’s diagnosis of SYNGAP1, a rare genetic disorder that affects neurodevelopment. In an exclusive interview with PEOPLE, Quick discussed the challenges she faced while keeping her daughter’s condition private for nearly a decade.
Kaylie, now 9 years old, was diagnosed with SYNGAP1 just before her third birthday—a diagnosis Quick initially found terrifying yet ultimately gave her clarity. The disorder, which has no cure and often requires extensive care, was first suspected when Quick noticed that Kaylie was not meeting developmental milestones. “Sometimes her eyes would cross. You just kind of know as a mom that there’s something going on,” Quick remarked.
After consultations with healthcare professionals, including a pediatrician and neurologist, Kaylie underwent tests that not only confirmed her developmental delays but also revealed subclinical seizures. A genetic test ultimately identified the condition as a de novo mutation, meaning it arose at conception and wasn’t inherited from either parent.
Reflecting on her journey, Quick expressed the emotional toll of coming to terms with her daughter’s diagnosis. “It’s kind of universal from other parents I’ve talked to… you end up kind of blaming yourself,” she shared. Despite initial fears about Kaylie’s future, Quick emphasized the support her family and community have provided throughout this journey.
In light of her experiences, Quick plans to leverage her public platform to raise awareness about rare diseases. CNBC is launching a new initiative called CNBC Cares, designed to advocate for the 30 million Americans living with rare diseases. Quick believes in the importance of connecting families, enabling them to share resources, best practices, and support, which can help alleviate feelings of isolation among those affected by similar conditions.
Quick’s efforts are driven by her desire to ensure that her daughter receives the best care possible while also exploring research opportunities that may lead to advancements in treatment for SYNGAP1. Today, Kaylie is engaging in various therapies, including Applied Behavior Analysis (ABA), and her mother reports positive progress in her ability to express herself.
Through Kaylie’s education at a special needs school, the family has focused on community interaction, which Quick believes is essential for raising awareness. “I want people to understand… that they want to be part of society,” Quick said, highlighting the importance of inclusivity for children with special needs.
As Quick continues to share her story, she hopes to inspire others while advocating for advancements in the understanding and treatment of rare disorders. Her commitment not only supports her daughter but also helps illuminate a path for families navigating similar challenges.