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 aftermat...

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 w...

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 tr...

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 whe...

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 ...

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 fun...

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 per...

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...

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 creatin...

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 bra...

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 ...

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 ...

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 ...

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 y...

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 effor...

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 ...

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 qu...

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...

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 ti...

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 a...

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. Sh...

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 th...

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 be...

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 ...

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...