Becky Quick: TV host shares details of her nine-year-old daughter's rare genetic disorder for the first time

Quick, who is a long-time co-anchor of CNBC's Squawk Box, has revealed her nine-year-old daughter Kaylie has a condition called SYNGAP1.

SYNGAP1 is a rare genetic condition causing intellectual disability, seizures, speech delays, and autism-like traits, according to the NHS. SYNGAP1 has no cure and people who suffer from it require round-the-clock care. It's managed through NHS services, focusing on therapies for development and behaviour.

In an interview with People, Quick said she first realised something may not be quite right with her daughter’s health when she was a baby. “I would say that it was probably around 8 months when I realized she wasn't hitting her milestones. Sometimes her eyes would cross. You just kind of know as a mum that there's something going on."

Quick took her daughter to a developmental doctor who confirmed that Kaylie wasn’t developing as expected. "We started working with therapists immediately," Quick said. “[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."

After then also seeing a neurologist, Kaylie was eventually diagnosed with SYNGAP1 just before she turned three. Quick explained what this means: “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."

Mum Quick said getting the diagnosis was “terrifying” as she didn’t really know anything about the disorder, but she was also relieved to finally have a name for what was impacting her daughter.

"It was scary. I think it's kind of universal from other parents I've talked to, either who have kids with this disease or other diseases. You end up kind of blaming yourself," says Quick. "You sort of think, 'Was it because I was drinking decaf coffee when I was pregnant? Is it because I kept coloring my hair?’,” she said.

She added that she had found it difficult to take in what some of the medics were saying to her. "I had one doctor who told me, 'well, maybe she's not going to be a Fortune 500 CEO, but she might go to college. I remember just being so mad at him at that point for writing off her prospects so early. But as you go through it, you're kind of hoping and praying that she'll just overcome it and the therapies will work and she'll be back on a normal track."

However, Quick says that the older Kaylie got, the more she realised that she was falling behind, adding that was "pretty devastating" for her to get her head around. Kaylie, who attends a special needs school, is currently trying to learn to speak as, although she understands what is happening in the world around her, she does not find it easy to communicate herself.

Going on to speak about how Kaylie’s health impacted all areas of her personal life, she said: “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."

In support of Quick and her family CNBC is launching a new initiative called CNBC Cures, which is dedicated to raising awareness those living with rare diseases. Quick says the initiative will aim to be a constant agitator for finding medical developments and also trying to bring a call to action where there are issues.

She added: “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. And they want to be part of society, and they want to be out in the community too."