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© 2025 Confessions of a Rare Disease Mama
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Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.
67 Episodes
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Send us a text The holidays can feel magical... or overwhelming. For parents of children with medical complexity, special needs, or chronic illnesses, the season often comes with invisible burdens and unspoken expectations. In this episode, I talk about the weight of the “shoulds” we place on ourselves: the traditions we think we have to do, the perfect holidays we imagine, and the grief that surfaces when reality doesn’t match our expectations. Together, we explore how to: Acknowledge the gr...
Send us a text After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories. We open up about: 🚗 The three road trips that (at times) tested our sanity, but al...
Send us a text Ever feel like the world is just... too much? Whether it's the endless news cycle, the weight of caregiving, or just the everyday overwhelm, you’re not alone. In this episode, I’m opening up about what happens to our nervous system when we’re overloaded—and sharing simple, accessible grounding techniques that can help bring us back to center. I’ll walk you through practical ways to regulate your body when it’s in survival or burnout mode, including: Getting outside and standing...
Send us a text In this casual solo episode, I’m just catching you up on what life has looked like lately over here. From solo parenting while Donald’s been away for job training, to the kids catching colds (because of course they did while Donald's gone), to navigating IEP meetings and school plans for next year—it’s been a lot, but also I'm surviving it! I’m sharing a peek into the daily chaos, the mental load, and some of the sweet moments too. Plus, we’ve got an upcoming trip on the calend...
Send us a text In this special episode of Confessions of a Rare Disease Mama, I'm sharing the live audio from a panel I had the honor of moderating at the Global Genes Rare Advocacy Exchange. This conversation dives into the power of creative fundraising—something so many of us in the rare disease community are tasked with, whether we feel ready or not. You'll hear from three incredible rare parents who are using their voices, talents, and grit to fund life-changing research and support. We t...
Send us a text In this solo stream-of-consciousness episode, I’m catching you up on everything happening in our world lately—from the latest updates on Roman and Stella’s treatment journey, to exciting news about my book Soaring Together, to some personal reflections on life, advocacy, and motherhood. You'll hear about where we are with the investigational brain medication, some hopeful signs we've been seeing, our upcoming family trips, and a big (and bittersweet) decision we’re considering ...
Send us a text Finding financial support and resources as a rare disease parent can feel overwhelming—but what if there was a platform designed to make it easier? In this episode of Confessions of a Rare Disease Mama, I sit down with Abby Zachritz, also known as Advocacy Abby, to talk about the incredible tool she’s created in partnership with SupportNow to connect families with grants and resources tailored to their child’s diagnosis and location. Abby shares how her own experiences as a mot...
Send us a text In this episode of Confessions of a Rare Disease Mama, I'm joined by Hilarie Geurink, a registered dietitian with a passion for empowering families to explore real food blended diets for their loved ones. Hilarie specializes in creating personalized nutrition plans that incorporate whole foods, providing an alternative to traditional formula-based tube feeding. We discuss the benefits of blended diets, practical and easy tips for getting started, and how they can positively imp...
Send us a text In this moving episode of Confessions of a Rare Disease Mama, I sit down with Lauren Williams, a rare disease advocate and one of the driving forces behind the CureGRIN Foundation. Lauren shares her journey as a mother to a son who bravely fought against GRIN1, a rare genetic condition, and the heartbreak she has and continues to endure from his passing just over a year ago. Lauren opens up about how she made the decision to continue to advocate after her son's passing, dedicat...
Send us a text As the new year begins, I’m sharing some personal changes I hope to put into practice in 2025. From doing more gratitude journaling to developing better sleep habits & less doom-scrolling before bed, I’m diving into the shifts in routine I want to cultivate this year. I’m also opening up about how the winter months affect me (especially once the holidays are over) and the intentional ways I’m working to combat the seasonal blues. If you’re someone who feels the weight of th...
Send us a text In this solo stream of consciousness episode, I reflect on the unique challenges and joys that the holiday season brings for families navigating rare diseases and medical complexities. I share practical tips for managing expectations, creating meaningful traditions, and finding joy in the small moments. I'm here to offer encouragement for parents feeling the weight of the season, reminding them that connection and presence matter far more than perfection. Whether you’re scaling...
Send us a text In this deeply personal episode of Confessions of a Rare Disease Mama, I sit down with Ashley Haywood, a devoted mother and passionate advocate for her 8-year-old daughter, Sadie, who is living with Sanfilippo syndrome. Often referred to as "childhood Alzheimer’s," Sanfilippo syndrome is a rare and progressive genetic condition that profoundly impacts children and their families. Together, Ashley and I explore how our children's life-changing diagnoses reshaped our lives in way...
Send us a text In this episode of Confessions of a Rare Disease Mama, we dive into the complexities of family transitions with Mary Ann Hughes, a certified Special Needs Divorce Coach. Mary Ann took her own experience of navigating divorce after 21 years of marriage, and raising two children on the autism spectrum, into a mission to help others. Mary Ann shares her invaluable insights and compassionate guidance on navigating divorce and separation when a child has profound medical and/or beha...
Send us a text Tune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all! Donate to Hurricane Helene recovery efforts in NC here Donate to Hurricane Helene recovery efforts in FL here Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more ab...
Send us a text In this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in. From policy advocacy t...
Send us a text Enjoy this solo catch-up episode! Some things I bring up during this episode: -Our kid's starting school (homebound vs. in person) -Roman's upcoming SIXTH birthday & fundraiser -Dealing with ignorant comments online -What quality of life means to me and my children -Upcoming weekend trip I have planned (without the hubby and kids)! -How it felt turning 36 this summer and officially entering my SELF LOVE era Listen to my episode on the Rarely Normal Podcast Listen to my st...
Send us a text I am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listen...
Send us a text For our very belated Father's Day episode I have my favorite baby daddy & life partner on, Donald to recap our incredible week at Disney for Stella's Make-A-Wish trip. We talk about some of our favorite things we did there and share some tips to other medical parents who are considering a MAGICAL trip to Disney. Happy Listening, friends! Feeling overwhelmed by the challenges of raising a medically complex child? Join me at the upcoming Powerful Medical Parenting Summit! W...
Send us a text With the passing of Memorial Day weekend, we get to another anniversary of our D-Day. 5 years since our entire lives were flipped upside down. Join me during this mini solo episode as I share some things I wish I could go back and tell myself at the time of Roman's diagnosis, knowing what I know five years in. Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop...
Send us a text Welcome to the podcast, Megan Craft! Megan is a Speech Language Pathologist, wife and mother of two, who saw an unmet need in the community when she kept hearing from parents of her patients that their children were not represented in books. She felt called to do something about it, so she started her children's disability inclusive book series called Mission: Inclusion. Through her series she is working towards expanding diversity of book characters to include children with va...
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