CNBC’s Becky Quick opened up about her 9-year-old daughter Kaylie’s diagnosis with a rare genetic disorder.
On Thursday, January 8, Quick and CNBC launched their new initiative, CNBC Cares, to help raise awareness for rare diseases and the families affected by them across the country. In a prerecorded package, Quick and her husband, Matt Quayle, discussed their own daughter’s journey with SynGAP1.
The couple began noticing differences in Kaylie’s behavior at her 1st birthday party. “It felt like a wake,” Quayle described in the package. “There was something so wrong with it, and we were trying to be happy and we were trying to celebrate it, but she couldn’t blow out the candle.”
Kaylie was officially diagnosed with SynGAP1 ahead of her 3rd birthday in 2019. The disease is so rare that Quick said their neurologist didn’t even know what it was. “SynGAP is a protein that your brain needs for its development. Kaylie has one good, functioning SynGAP, and one that is not functioning,” she explained. “And so, she has about half the protein she needs, of this SynGAP protein for brain development. Kids who have SynGAP, most of them have autism. Virtually all of them have seizures. They have developmental delays. There are behaviors that are associated with it, and intellectual disability.”
While the couple initially focused their hopes on Kaylie one day attending college, they shifted their focus to celebrate smaller milestones, such as walking, talking, and making friends.
On Thursday, Quick shared more about Kaylie’s journey while promoting CNBC Cares on the third hour of Today. “She’s doing great. Kaylie is 9 now. She walks. She’s able to run. She swims. She does all kinds of great things, and she’s working really hard at trying to talk,” Quick stated. “Sometimes she can get the words out, sometimes not. Last night, she said, ‘Mama, help.’ She can say it sometimes, sometimes she can’t, but she works really, really hard, harder than anybody I know.”
Prior to Kaylie’s 1st birthday, Quick said she noticed that Kaylie wasn’t hitting certain developmental milestones around 8 months of age. Quick said her daughter struggled with rolling over, would often cross her eyes, and would zone out for moments at a time, something they later discovered were seizures.
Though there’s no specific treatment for SynGAP1, Quick said Kaylie undergoes different kinds of therapy both at home and at her school for children with special needs. “It’s really rare. When Kaylie was first diagnosed back in 2019, there were just under 1,000 people in the world who has been diagnosed with this,” she told Today‘s Al Roker, Craig Melvin, and Dylan Dreyer. “But fast forward to today, and it’s just over 1,700.”
Bringing awareness to the rare diseases community is the goal of CNBC Cares. “There’s 10,000 rare diseases, and it affects 30 million Americans, 300 to 400 million around the globe,” she shared. “And that’s what we kind of realized on our path, that rare is not really so rare.”
She continued, “And if we can find ways to find commonalities or to make it so that every one of these family groups doesn’t have to reinvent the wheel, that’s our hope with this. That, and then trying to make sure that we are focusing on bringing together regulators, legislatures, biotech and pharma companies and investors to try and look at the possibilities for these great new therapies that are on their way but probably need a little help and attention to really thrive.”
Quick ended her Today appearance by sharing how proud she is of her “beautiful” daughter. “She’s just light and love and laughter. And she can’t speak, but that doesn’t mean that she can’t understand what people are saying around her. And I’ve found through Kaylie’s friends and through other people that we’ve gotten to know that that’s not such an unusual situation,” Quick gushed. “And I just hope we can raise some awareness with that, that these are beautiful children and they are full of potential and full of all kinds of life and love if people just kind of look a little closely and maybe have that understanding.”
Third Hour of Today, Weekdays, 9 a/8c, NBC
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