It’s the number one unmet need that CDKL5 caregivers have mentioned on our show, and we know exactly why. When your child needs 24/7, specialized care, it’s not easy to do it on your own, and it’s even harder to find someone else who you can trust to meet your child’s needs. Medication management, lifting and positioning, behavior management, seizure safety, specialized feeding needs, and more - it takes a special person to fill the caregiving role for our kids. In this episode, we talk about what respite is (and what it’s not) and how we’ve navigated respite in our own lives. We also offer suggestions to families for finding and funding respite.

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View complete show notes and listen for free on Spotify: https://open.spotify.com/show/4oxNoHl...