Confessions of a Rare Disease Mama

Send us Fan Mail When your child receives a life-altering diagnosis, you leave the hospital with a care plan. ...But no one gives you a coping plan. In this episode, I’m talking about the part no one prepares you for: the emotional aftermath of becoming a medical parent overnight. The grief, the anxiety, the constant fear… and the expectation that you’ll somehow carry it all while staying strong f...

Send us Fan Mail 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 su...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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 da...

Send us Fan Mail 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 incredi...

Send us Fan Mail 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 si...

Send us Fan Mail 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 re...

Send us Fan Mail 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 th...

Send us Fan Mail 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. Laur...

Send us Fan Mail 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 inte...

Send us Fan Mail 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 sea...

Send us Fan Mail 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...

Send us Fan Mail 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 compa...

Send us Fan Mail 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 , Bar...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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 antho...

Send us Fan Mail 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 ch...

Send us Fan Mail 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 : Ama...

Send us Fan Mail 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 . Thr...

Send us Fan Mail In honor of Roman being home for one whole year from our terrifying 2 month PICU stay, I decided to compile a list of all my must-haves while I am inpatient with my child. I also share other tips for holding onto your sanity while you are in the midst of a long and unexpected hospital stay with your child. Happy listening, yall! Shop all my inpatient must-haves below: https://www....

Send us Fan Mail I hope ya'll have a pen and paper to write down ALL the amazing travel tips this week's guest shares with us! Kristy Cook is a mother of four (one who is diagnosed with a rare form of Epilepsy) & the founder of Accessible Adventures. She believes that nature is meant for EVERYONE and is very passionate about accessible travel. This week she shares more about her fami...

Send us Fan Mail There are SO many complex emotions that come along with the question of potentially having more kids- ESPECIALLY if you have one (or in my case, two) that have severe medical needs. There are many pros and cons to weigh and it's something that has been weighing heavy on my heart lately as my husband and I (and our kids) get older. Join me for a good old fashioned solo episode...

Send us Fan Mail This week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and t...