After 25 years in front of the camera, CNBC anchor Becky Quick is sharing the most important story of her life—one filled with love, hope, and extraordinary courage. At the heart of it is her youngest child, Kaylie, a radiant 9-year-old girl who Quick describes as "full of light and life and love."

Kaylie has SYNGAP1, a rare genetic condition affecting approximately 1,700 people worldwide. The condition means she produces only half the SynGAP protein needed for typical brain development, resulting in seizures, developmental differences, and autism. But as Quick beautifully emphasizes, Kaylie is so much more than her diagnosis.

"She is a beautiful, happy, loving girl," Quick shares warmly. "Those who know us say she's a mini-me. But I know she's better than I've ever been. She works harder every day than anyone I know."

When Kaylie was born, everything seemed perfect. She was a content, happy baby who smiled at less than a month old. Quick even took photos because she was so delighted by her daughter's early smiles. As developmental differences became apparent around seven months, the family began seeking answers and support.

The journey led to a SYNGAP1 diagnosis just before Kaylie's third birthday. While initially devastating, Quick found that the diagnosis brought unexpected gifts: understanding, a supportive community of families facing similar challenges, and most importantly, hope for future treatments and cures.

Today, Kaylie continues making meaningful progress with the support of dedicated therapists, doctors, and teachers. Her family has learned to celebrate every milestone and cherish the joy she brings to their lives. Quick's eldest child, son Kyle, shares a special bond with his sister, and family beach trips remain treasured moments together.

Quick's decision to share their story publicly stems from a place of gratitude and purpose. She acknowledges that her family has been fortunate to access excellent care and resources—advantages not available to many families facing rare diseases. This realization has inspired her to launch CNBC Cures, an initiative designed to shine a light on rare disease research and help other families navigate similar journeys.

"We are some of the luckiest ones," Quick reflects. "We have resources to pay for help and access to the best care and therapists. Most people aren't so lucky. And that's a big part of the reason we feel like we have to speak up now."

Through sharing Kaylie's story, Quick hopes to foster greater understanding and compassion for families affected by rare diseases. She's also working to connect families with resources, raise awareness about conditions like SYNGAP1, and accelerate research toward treatments and cures.

Quick's message is ultimately one of hope and celebration. Kaylie has transformed her family "in so many ways, all for the better," teaching them about resilience, unconditional love, and the importance of advocating for those who need support. This brave mother's decision to share their journey promises to light the way for countless other families, proving that even rare diseases can't diminish the extraordinary light that special children bring to the world.