Episode 34: Kim’s Life with LilyAnna (age 23)

<p><strong>Episode 34: Kim’s Life with LilyAnna (age 23)</strong></p><p>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!</p><p><br></p><p><strong>SHOW NOTES</strong></p><p>Check out our website and sign up for our quarterly newsletter at <a href="http://www.cdkl5incolor.com" target="_blank" rel="ugc noopener noreferrer"><strong>www.CDKL5inColor.com</strong></a></p><p>Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, &amp; YouTube!</p><p>Email us to be on the show! <a href="mailto:CDKL5inColor@gmail.com" target="_blank" rel="ugc noopener noreferrer">CDKL5inColor@gmail.com</a></p><p>Thank you to our 2026 Airwave Ally Sponsor - <a href="https://www.ucb-usa.com/Patients"><u>UCB Pharma</u></a>!</p><p><br></p><p><strong>MENTIONED IN THE EPISODE:</strong></p><p><a href="https://calmamongstthechaos.com/" target="_blank" rel="ugc noopener noreferrer"><strong>Calm Amongst the Chaos - Kim’s Blog</strong></a></p><p><a href="https://cacfamilysupport.com/" target="_blank" rel="ugc noopener noreferrer"><strong>CAC Family Support (Arizona)</strong></a></p><p><a href="https://e1.nmcdn.io/assets/cdkl/wp-content/uploads/2023/05/CDD-VoP-REPORT.pdf" target="_blank" rel="ugc noopener noreferrer"><strong>Voice of the Patient Report: CDKL5</strong></a></p><p><a href="https://www.asha.org/public/speech/disorders/aac/?srsltid=AfmBOorU6leRip4jWWaNARsFTB6w6buGbZppfDgFUyu2JI8Y7d-jN6ht" target="_blank" rel="ugc noopener noreferrer"><strong>Article: AAC Systems for Communication</strong></a></p><p><a href="https://www.instagram.com/notanotherpilatescoach/" target="_blank" rel="ugc noopener noreferrer"><strong>CDKL5 Mama Pilates on Instagram</strong></a></p><p><a href="https://ryanhouse.org/" target="_blank" rel="ugc noopener noreferrer"><strong>Ryan House Respite in Arizona</strong></a></p><p><a href="https://kiefer.com/products/kiefer-adjustable-foam-swim-collar-youth?_pos=1&_sid=7deb2ebb5&_ss=r" target="_blank" rel="ugc noopener noreferrer"><strong>Keifer Swim Collar</strong></a></p><p><a href="https://www.pfd-a.com/" target="_blank" rel="ugc noopener noreferrer"><strong>Gregory’s Swim Collar with Harness</strong></a></p><p><br></p><p><strong>RESOURCES:</strong></p><p><a href="https://products.brookespublishing.com/Comprehensive-Literacy-for-All-P1165.aspx" target="_blank" rel="ugc noopener noreferrer"><strong>Book: Comprehensive Literacy for All</strong></a></p><p><a href="https://www.caregiveraction.org/lifting-your-loved-one-safely/" target="_blank" rel="ugc noopener noreferrer"><strong>Article: Essential Tips for Caregiver Lifting</strong></a></p>