CNBC’s Becky Quick recently opened up about her 9-year-old daughter Kaylie’s private battle with a rare genetic disorder.
In an interview with People, published on Thursday, January 8, Quick, 53, revealed that Kaylie suffers from SYNGAP1. According to the Child Neurology Foundation, SYNGAP1 is a genetic disorder that leads to seizures and developmental problems.
The longtime coanchor of CNBC’s Squawk Box said that it was “probably around 8 months” when she realized Kaylie “wasn’t hitting her milestones.”
“Sometimes her eyes would cross. You just kind of know as a mom that there’s something going on,” Quick explained to People, adding that after doing a study, they found Kaylie wasn’t hitting the right benchmarks. “We started working with therapists immediately. [They] helped Kaylie with her ability to roll over, with getting fluid motions, with eventually being able to walk and lots of things. But we also noticed some other things that were going on.”
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After discovering Kaylie was having subclinical seizures, a genetic test showed that Kaylie had SYNGAP1.
“It was de novo, a genetic disease, which means that basically one letter in her DNA was off at birth, and it didn’t come from either me or my husband. It just happens sometimes at conception,” she said.
Becky Quick, her husband, Matt Quayle, and their two kids Courtesy of Becky Quick/InstagramQuick — who shares Kaylie and a son, born in 2011, with husband Matt Quayle — said the news was “terrifying” and “scary” to hear.
“I think it’s kind of universal from other parents I’ve talked to, either who have kids with this disease or other diseases,” Quick told People. “You end up kind of blaming yourself. You sort of think, ‘Was it because I was drinking decaf coffee when I was pregnant? Is it because I kept coloring my hair?’”
As Kaylie has gotten older, the more Quick realized she was missing and falling behind — which was “pretty devastating.”
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“Our family was our biggest support,” she gushed. “Our parents, our siblings. But at the same time, because of my public role on TV, it wasn’t something that I really talked about at work. I had to go to work and kind of shut that part off because it was just so … anything with your kids, you’re so emotional, so caught up in it.”
As of today, Kaylie is working hard to speak and communicate with others.
“Part of what happens with SYNGAP is the dendrites in your brain kind of get overloaded, and sometimes that massive amount of stimulus that’s coming in from everything around her overwhelms her,” Quick explained. “She might break down and bite herself, or even bite me or her father. She doesn’t mean it. It’s just her way of coping with being overwhelmed. And she’s been doing a lot of ABA therapy, and she’s doing much better with it.”
Inspired by Kaylie, CNBC is also launching a new initiative called CNBC Cures to raise awareness for the 30 million Americans living with rare diseases.
“I want people to understand and raise awareness of people like our kids that may look a little differently or act a little differently, but they’re just kids too,” Quick said. “And they want to be part of society, and they want to be out in the community too.”
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