CDKL5 in Color

Episode 44: Exploring Caregiver Guilt (Part 3) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the po...

Episode 43: Exploring Caregiver Guilt (Part 2) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the po...

Episode 42: Exploring Caregiver Guilt (Part 1) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the po...

Episode 41: Michal’s Life with Natalia (age 5) There are families navigating a CDKL5 Deficiency Disorder diagnosis all over the world. What makes the diagnosis a little easier? Finding support within your own country if you’re lucky enough to have it. In this latest episode, we welcome CDKL5 Dad, Michal, who is doing big things with his fellow CDKL5 families in Poland. He’s also Chair of the Leade...

Episode 40: Let's Talk About Moments of Joy Life with CDKL5 is filled with uncertainty, difficult decision-making, and sometimes heartbreak, but there are also moments of joy, so let’s talk about them. Taking time to recognize the moments in life that spark joy for us as parent caregivers can be a boost for our mental health. In fact, actively engaging in “micro-acts” of joy has been shown to...

Episode 39: Let’s Just Chat! Sometimes it’s good just to chat. In this latest episode, we talk about what’s been on our minds of late. We talk about the ongoing challenges we face with home nursing and respite, how the upcoming federal budget for 2027 may impact our families and what we can do to advocate, and we talk MEGA COLON - it’s a variety! Have a listen! SHOW NOTES Check out our website and...

Episode 38: Aditi’s Life with Ria (age 6) Parenthood changes us, no question, but the adjustments we make when parenting a child with medical complexities and disabilities takes the experience to another level. In this latest episode, you’ll hear Aditi’s experiences raising her feisty eldest daughter, Ria, who lives with CDKL5 Deficiency Disorder. We talk about the intensities of caregiving and th...

Episode 37: Let’s Talk About Gene Therapy Gene therapy is on people’s minds, so let’s talk about it! What is known, what is unknown, and how are we meant to make sense of it all? We know from the quiz that we put out in September that, while most respondents had a decent understanding of the basics of gene therapy as a treatment approach, the majority did not understand the CDKL5 gene therapy land...

Episode 36: Let’s Talk About Bathing Our Kids Either love it or hate it (or somewhere in between), bathing our kids is part of life. For many families living with CDKL5 Deficiency Disorder, bath time can be tricky due to positioning challenges, lifting and transferring, less-than-ideal spaces, or sensory issues. In this latest episode, we talk about how we manage, and we share equipment, tips, and...

Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg How can AI impact the future of CDKL5 research? We tackle this topic and more with our guest, CDKL5 Dad and Cure5 Foundation co-founder, Andreas Borg. His 4 year old daughter, Siena, lives with CDKL5 deficiency disorder. Andreas shares about Cure5 Foundation which has multiple drug repurposing projects in the pipeline for CDKL5, including one...

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

Episode 33: Let’s Talk About Tube Feeding Adequate nutrition and hydration are the foundation of health. Unfortunately, it can be difficult for people living with CDKL5 Deficiency Disorder to take in all that they need to be well nourished or to maintain their growth curve. A feeding tube can help close the gap for oral eaters and is a necessity for anyone who cannot eat safely by mouth. In this e...

Episode 32: Ali’s Life with Raegan (age 5) In this episode, we welcome Ali to the podcast to talk about life with her five-year-old daughter, Raegan. We touch on topics that all CDKL5 caregivers can relate to. How to find therapies that work, especially when living in rural areas. Navigating the transition into the school system. Earning income when employment feels impossible. And, of course, the...

Episode 31: Let’s Ring Out 2025 It’s been a great year for us at CDKL5 in Color! Thank you to all our listeners and supporters. YOU are the reason behind it all and we are grateful. To ring out the year, we asked our listeners to share with us their celebrations, challenges, wisdom, worries, wonders, hopes - anything about life with CDKL5 that reflects on how 2025 went or that looks towards 2026....

Episode 30: Kara’s Life with Bennett (age 9) In this episode you’ll meet Kara and her nine-year-old son, Bennett. Bennett is a middle child and his mom shares about the unique relationships he has with each of his brothers. Kara reflects on how she navigated getting in-home nursing support - spoiler, it was with the help of other disability parents, not professionals (a typical experience in our c...

Episode 29: Anna’s Life with Addy (age 4) In this episode we welcome another sweetheart CDKL5 mama, Anna, on the podcast to talk about life with her four-year-old daughter, Addy. We talk about the loving relationship she has with her older sister, Charlotte, and how Addy’s personality shines through in every space where she goes. We also talk candidly about how hard decision-making and acceptance...

Episode 28: Understanding CDKL5 Deficiency Disorder There are people all over the world whose children are living with CDKL5 deficiency disorder. We prepared the free eBook "Understanding CDKL5 Deficiency Disorder" for our fellow CDKL5 moms and dads. It is intended to give an introduction to CDD in an easy-to-read format. In this episode, we discuss what's in the eBook - the major sy...

Episode 27: CDKL5 Science Chat with Ben Goult Put your thinking caps on because we have a scientist in the studio with us! In this episode we welcome Ben Goult, a biochemist and professor of mechanistic cell biology at the University of Liverpool. His lab works on a protein called talin, and he has discovered a connection between talin and CDKL5. While this is a science-heavy episode, Ben does a n...

Episode 26: Keshia’s Life with Emani (age 16) Our guest, Keshia, shares about the beautifully complex life she has with her daughter, Emani. We discuss the challenges of rural life and limited support systems as well as the mindset Keshia has cultivated that has empowered her to navigate the ups and downs. We also talk about the importance of protecting your mental health as a caregiver as well as...

Episode 25: Let’s Talk About AAC While most people living with CDKL5 Deficiency Disorder are non-speaking, this does not mean they cannot communicate! AAC or Augmentative and Alternative Communication refers to any method or tool that helps someone communicate when they cannot use their spoken words effectively. In this episode we talk about our own children’s journeys with AAC and some of what we...

Episode 24: Teresa’s Life with Louise (age 26) Each person who lives with CDKL5 deficiency disorder is unique, and Louise is the epitome of living a unique life with CDKL5. Her CDKL5 mutation is in her introns, and her main seizures are the absence type, which initially were frequently missed. She has many skills that we don’t typically see in our community - she can talk, she can walk, jump, and...

Episode 23: We’re Back! Summer recap and an opportunity to share your knowledge with us and ASGCT! We’re back after our summer hiatus! Hear us chat about the successes and challenges summer break brought, and get the scoop on a project we are working on with ASGCT - the American Society of Gene & Cell Therapy. Get involved by taking our “quiz” on gene therapy and CDKL5. Your responses will hel...

Episode 22: What has been your biggest lesson learned? It’s June and that means it’s CDKL5 awareness month! We are doing things a little differently on the podcast this month. We are diving into some emotional topics and sharing insights directly from our peer caregivers. Our children who live with CDKL5 deficiency disorder are so loved, but life with CDKL5 is hard , so join us as we talk about it...

Episode 21: How has this diagnosis changed you? It’s June and that means it’s CDKL5 awareness month! We are doing things a little differently on the podcast this month. We are diving into some emotional topics and sharing insights directly from our peer caregivers. Our children who live with CDKL5 deficiency disorder are so loved, but life with CDKL5 is hard , so join us as we talk about it. We as...

Episode 20: What does your family need more of and/or less of in this CDKL5 life? It’s June and that means it’s CDKL5 awareness month! We are doing things a little differently on the podcast this month. We are diving into some emotional topics and sharing insights directly from our peer caregivers. Our children who live with CDKL5 deficiency disorder are so loved, but life with CDKL5 is hard , so...