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In our latest episode we welcome OG CDKL5 mama, Kim. She’s busy managing a large family in Arizona, which includes caregiving for her 23-year-old daughter, Lily, who lives with CDKL5 Deficiency Disorder. We talk all about the complexities Kim is navigating now that Lily is an adult, including lack of appropriate day programming, how adult medical care differs from pediatrics, and the ever-present challenge of finding respite care. Kim reflects on how caregiver advocacy doesn’t end when your child turns 18. The fight to ensure our children have what they need is an ongoing struggle, but we are powered by love to continue the fight. Thanks for joining us, Kim! Check out our website and sign up for our newsletter - www.CDKL5inColor.com Follow us on Facebook, Instagram, LinkedIn, & Blue Sky! #CDKL5 #CDKL5inColor #CDKL5Stories View show notes and listen for free on Spotify: https://open.spotify.com/show/4oxNoHl...