Becky Quick, CNBC co-anchor Squawk Boxhas shared details of her daughter's rare genetic disease.
Quick wrote an essay about CNBCposted Thursday, explaining that despite having worked for the company for 25 years, most people don't know much about his family, including his nine-year-old daughter, Kaylie.
“Kaylie is a beautiful, happy and loving girl. Those who know us say she is a mini-me. But I know she is better than me. She is full of light, life and love. And she works harder every day than anyone I know,” the essay began.
When their daughter was born, there were minimal problems as she smiled for the first time in a few weeks and slept well. However, when he was about seven months old, he “crossed his eyes too often” and couldn't turn around. Kaylie was brought to therapists and doctors at eight months old, where she was first diagnosed with developmental delays.
As those delays persisted, he was prescribed an EEG to monitor his brain, where seizures were discovered. Before her third birthday, genetic testing diagnosed Kaylie with SYNGAP1.
The presenter explained that SYNGAP1 is a disorder in which a person does not produce enough SynGAP protein necessary for proper brain development. As a result, Kaylie suffers from seizures, developmental delays, and intellectual disabilities. According to the Child Neurology Foundation, there is currently no cure for SYNGAP1.
“And like most of the other Syngap residents, she has autism. Kaylie's autism is severe,” Quick added.
“He has apraxia, which means that although he has difficulty speaking, he has very receptive language and, I believe, understands most of what is going on around him,” the essay continues. “Sometimes people assume that just because Kaylie can't talk that she doesn't understand what they're saying. Sometimes they talk about Kaylie right in front of her. Sometimes she's cruel. I've heard people call her retarded, spoiled, or undisciplined.”
While receiving the original diagnosis was “devastating,” Quick wrote that she was grateful to understand what her daughter was experiencing and to find a community of people who were facing the same issues. The CNBC co-anchor has since had her daughter work with a team of therapists, doctors and teachers, which she says “helped her tremendously.”
“Kaylie continues to make progress and we have learned a lot about how to best try to help her. But we still have a long way to go,” the essay said. “And we are some of the luckiest. We have resources to pay for help and access to the best care and therapists. And doctors and companies call me back because of my public position. Most people are not so lucky.”
