CDKL5 in Color

Episode 19: What does support look like to 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 18: What impact does life with CDKL5 have on your family? 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 ta...

Episode 17: Ed’s Life With Haley (age 18) In this latest episode we introduce you to our children’s grandparents and welcome a well-known CDKL5 grandpa, Ed Fennell. Ed shares some awesome stories about his granddaughter, Haley, particularly about how she communicates and takes the world in. She is a spitfire! Ed has always been her champion and is passionate about finding a way to bring out her vo...

Episode 16: Let’s Talk About Acceptance Acceptance doesn’t turn on like a light switch. Instead, it's a series of realizations and adjustments we make as we transform our expectations and embrace our reality. It’s a process, and as parent caregivers to our children living with CDKL5 deficiency disorder, we all go through it. In this latest episode, you’ll hear us share personal stories as well...

On this episode we welcome Renee who lives with her young family in Colorado. She tells us about the special sibling relationship her children have and we learn all about therapy intensives (and discover Owen’s newfound love of horses!). We also hear Renee’s beautifully peaceful perspective on the rare disease journey and how she finds gratitude in Owen’s story - just as it is written. This gentle...

Carol-Anne is one of the OG CDKL5 moms! Her daughter, Amber, is nearly 20 years old and Carol-Anne has been on the scene getting involved for CDKL5 even before her daughter was officially diagnosed. She’s co-founder of CDKL5 UK, a professional social worker, and is passionate about supporting families, raising awareness, and challenging assumptions. In this latest episode, we talk with Carol-Anne...

Episode 13: Let's Talk About Adaptive Clothing Living the CDKL5 life means all kinds of adaptations and clothing is not an exception! Adaptive clothing can come in quite handy and, fortunately, the options available seem to increase each year! In this latest episode, we share where we like to shop for our kids for things like shoes, bodysuits, and even swimwear. We also talk a bit about how ou...

In this latest episode, we reflect on how it’s been going for us at the CDKL5 in Color podcast and what people can expect in our upcoming (first!) newsletter! We are just so touched and proud of the response we’ve had from our CDKL5 community. Be sure to sign up for our newsletter so you get all the info right to your inbox! Sign up here: https://www.cdkl5incolor.com/newsletter-sign-up SHOW NOTES...

Episode 11: Heather’s Life with Ezra (age 3) If you are in the early years of parenthood, you can probably relate to Heather. Mom of two littles, one with CDKL5, plus she and her husband are working full-time - life is busy! Ezra lives life in a big way and distinguishing what is CDKL5-related behavior vs typical toddler behavior is complicated for her parents. In this episode you’ll explore Ezra’...

No one likes being in the hospital, but when your child has a diagnosis of CDKL5 Deficiency Disorder, hospitalizations are a part of life. Some of the most challenging hospitalizations are for respiratory illness. Recently, Marissa was in the hospital for two weeks with her son for the flu. In this episode, hear all about their stay as well as about how we prepare for hospital stays, tips and tric...

Adaptability is the name of the game when you are a parent caregiver to someone living with CDKL5 Deficiency Disorder, especially when you are juggling a professional career. In this episode we welcome Stephanie, geoscientist, educator, and medical mama to her daughter Isobel. We talk about how caregiving duties and medical needs not only impact employment, but in Stephanie’s case, changed the tra...

Seizure Action Plan Awareness Week is Feb 10-17, 2025 and in this latest episode we talk about seizure action planning basics and share our experiences developing these specialized plans for our loved ones with CDKL5 Deficiency Disorder. We also share some personal tales about others’ reactions to our kids' seizures and reflect on the realities we manage as our “normal” living with a severe refrac...

How familiar are you with rare disease advocacy? In episode 7 we talk about how advocacy impacts drug development as well as how it impacts the social systems our children are a part of. We share ways to get involved with organizations that champion rare diseases and encourage you to get out there and share your challenges and needs with those who can make a difference. We also share about a Rare...

In this latest podcast episode, we delve into the challenges of managing constipation in CDKL5 Deficiency Disorder. We share our personal experiences, discuss why constipation is a common issue for individuals with this rare disease, and suggest practical tips and strategies that you can consider with your child’s doctor. Adequate Hydration! Getting our kids moving or standing, tummy massage. Diet...

Deshaun is a sweetheart CDKL5 mama whose positive attitude will make you smile. She is a champion of accessing mental health support and talks about how prioritizing her own mental health has made a profound impact on her life. Hope you enjoy learning a bit about her life and her son, Braylon, who is a music lover like his mama! SHOW NOTES Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn,...

Before our kids were diagnosed with CDKL5 Deficiency Disorder, they were diagnosed with epilepsy. In this latest podcast episode, we share our initial experiences receiving an epilepsy diagnosis for our infants. We also share our thoughts on building a collaborative provider relationship that works. SHOW NOTES Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Check...

In Episode 3, you’ll hear from CDKL5 mama, Rachel, who is raising her amazing nine-year-old daughter, Mimi, with her family in California. There are so many quotables in this episode! Rachel is an insightful speaker and her stories about life with Mimi are captivating. Listen in as Rachel reflects on the unexpected path they’ve walked with CDKL5, the challenges they face balancing Mimi’s physical...

It’s a beautiful thing to have a day filled with peaceful joy, but oftentimes when your child has a diagnosis of CDKL5 Deficiency Disorder, a holiday can feel anything but peaceful or joyful. Unfortunately, sometimes what should be a special day can feel emotionally and/or physically draining. So, what can we do to survive holidays with CDKL5? In this latest podcast episode, we dive into how we ma...

Why start a CDKL5 podcast? CDKL5 in Color is a passion project that stems from us wanting to do more to amplify CDKL5 and to connect with other diagnosed families who might be looking for support out in the world of podcasts. Like other rare diseases, you’re not going to just bump into someone in the store who knows CDKL5 or find people by chance. You really need to seek out members of this CDKL5...

The podcast you’re listening to is CDKL5 in Color. You’ll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. Together they’ll explore life with CDKL5 in a variety of topic-based candid chats. They’ll also invite you to get to know members of the CDKL5 commu...