My journey with CDKL5 deficiency disorder began in 2016 when my infant son, Gregory, received the diagnosis. Hearing that my new baby would likely never walk or talk and would face a lifetime struggle with seizures, I felt utter despair and deep sadness. Over time, I transformed that heartache into purposeful action, and found meaning in making a difference for Gregory and for CDD.Unable to return to my career in school social work after my son's birth, I instead put my time, passion, and energy into championing the CDKL5 cause in many different ways. My current role is as producer, content creator, & co-host of the 'CDKL5 in Color' podcast with my friend and fellow CDKL5 mama, Amanda. I hope you'll tune in and listen to our CDKL5 stories and those from other members of our diverse community. Together we are weaving a tapestry of vibrant community stories for you to explore.Check out our website www.CDKL5inColor.com for more information on what we're all about!I welcome messages so please get in touch!