CNBC’s Becky Quick details daughter’s rare disease journey

Over the past 25 years, I’ve been a familiar face on CNBC, but there’s a part of my life that many people don’t know about – my family. Our family is a happy one, but we also face unique challenges.

Our youngest daughter, 9-year-old Kaylie, has a rare genetic disease that has had a profound impact on our lives. She has SYNGAP1, a condition that presents with seizures, developmental delays, and intellectual disabilities. Despite her challenges, Kaylie is a beautiful and loving girl who works tirelessly every day.

Living with SYNGAP1 and apraxia means that Kaylie faces difficulties in controlling her body, which can be incredibly frustrating for her. She also has autism, which adds another layer of complexity to her condition.

Despite the challenges, Kaylie continues to make progress with the help of dedicated therapists and doctors. Our family has been fortunate to have access to resources and support, but we know that many others facing similar situations are not as lucky.

After Kaylie’s diagnosis, it took me some time to come to terms with our new reality. It was a struggle to balance my personal life with my professional responsibilities at CNBC. However, I now feel compelled to speak out about rare diseases and the need for more awareness and support.

Our journey with Kaylie has been a challenging one, but it has also shown us the strength and resilience of families dealing with rare diseases. Through initiatives like CNBC Cures, we aim to raise awareness, foster collaboration, and drive progress in the field of rare disease research.

For families like ours, time is of the essence. Every day without a cure means more challenges for our loved ones. By joining forces and advocating for those affected by rare diseases, we can make a difference in the lives of millions.

As we navigate this path together, we remain hopeful that advancements in science and technology will bring us closer to finding cures for rare diseases. By sharing our story and raising awareness, we can create a supportive community for those in need.

Join us in the journey towards a brighter future for individuals and families affected by rare diseases. Together, we can make a difference and advocate for a better tomorrow.