Becky Quick, a co-anchor for CNBC’s Squawk Box, has shared particulars of her daughter’s rare genetic disease.
Quick wrote an essay on CNBC, revealed Thursday, explaining that regardless of having labored for the corporate for 25 years, most individuals don’t know a lot about her household, together with her nine-year-old daughter, Kaylie.
“Kaylie is a beautiful, happy, loving girl. Those who know us say she’s a mini-me. But I know she’s better than I’ve ever been. She is full of light and life and love. And she works harder every day than anyone I know,” started.
When her daughter was first born, there have been minimal issues as she smiled for the primary time inside weeks and slept nicely. However, when she was round seven months outdated, she “crossed her eyes too often” and couldn’t roll over. Kaylie was taken to therapists and medical doctors at eight months outdated, the place she was first recognized with developmental delays.
As these delays endured, she was prescribed an EEG to watch her mind, the place seizures have been found. Before she turned three, a genetic test recognized Kaylie with SYNGAP1.
The anchor defined that SYNGAP1 is a dysfunction the place an individual doesn’t produce sufficient of the SynGAP protein wanted for correct mind growth. As a consequence, Kaylie experiences seizures, developmental delays and mental disabilities. According to the Child Neurology Foundation, there’s at the moment no remedy for SYNGAP1.
“And like most other Syngapians, she has autism. Kaylie’s autism is severe,” Quick added.
“She has apraxia, which means that even though she struggles to speak, she has very high receptive language and — I think — understands most of what is going on around her,” the essay continued. “Sometimes people assume that just because Kaylie can’t talk she doesn’t understand what they are saying. Sometimes they talk about Kaylie right in front of her. Sometimes it’s unkind. I’ve heard people call her retarded, spoiled, or undisciplined.”
While receiving the unique prognosis was “devastating,” Quick wrote that she was grateful to know what her daughter was experiencing and to discover a neighborhood of people that have been coping with the identical points. Since then, the CNBC co-anchor has had her daughter working with a crew of therapists, medical doctors and academics, which she wrote “helped tremendously.”
“Kaylie continues to make progress, and we have learned a lot about how to best try and help her. But we have a long, long way to go,” the essay learn. “And we are some of the luckiest ones. 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 aren’t so lucky.”