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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 impact the health and quality of life for children and adults with feeding tubes. Hilarie shares her wealth of knowledge and practical advice, along with some inspiring success stories from the families sheâ s worked with.

Whether youâ re already using a blended diet or are curious about making the switch, this episode is packed with valuable insights and encouragement for caregivers navigating this journey.

Key Topics Covered:

• What is a real food blended diet?
• The health benefits and challenges of switching to whole foods for tube feeding.
• Strategies for preparing and balancing a nutritious blended diet at home.
• Resources and tools to support families interested in blended diets.

Tune in for an enlightening and encouraging conversation that sheds light on the power of real food!

Connect with Hilarie:

• Instagram: @blendedtubefeeding
• Get 25% off monthly membership to her online community and resource group, Blended Tube Feeding Made Simple: HERE
  
  

Additional Resources:

• Article on blenders and discount programs: https://blendedtubefeeding.com/the-best-blenders-for-tube-feeding-with-discounts/
• Article on commercial real food formulas: https://blendedtubefeeding.com/real-food-tube-feeding-formulas-a-dietitians-review/

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

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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, dedicating her life to supporting other families navigating GRIN1 diagnoses. We discuss the importance of community, the challenges of advocating for rare diseases, and the legacy of love and resilience that her son has inspired.

Trigger Warning: Child loss

Connect with the CUREGRIN Foundation:

• Website: https://curegrin.org/
• Social Media: @curegrin_foundation

Connect with Lauren:

• On facebook: https://www.facebook.com/laurenrochellewilliams/
• Through email: Lauren@curegrin.org
• Join her virtual support group (Unbreakable Bonds) for bereaved parents of medically complex children: https://www.facebook.com/share/g/15XzQPCNTz/

Thank you for listening and holding space for this important discussion.

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

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 the colder, darker days, this one’s for you. Together, let’s continue to find ways to nurture hope and light as we move forward into a new year.

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

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 back traditions or adapting them entirely, this episode is a gentle reminder that the holidays can still hold magic, even when they look different.

Join the Conversation:
Have thoughts about today’s episode? Share your holiday tips, reflections, or just drop a note to connect! Send me a message or tag me on social media with your thoughts. Let’s navigate this season together, one moment at a time.

Don’t Forget:
If you enjoyed this episode, please take a moment to subscribe, leave a review, and share it with another parent who might need a little holiday encouragement. Your support means the world and helps us reach more families who need it most.

Listen to the TOP 3 episodes of 2024:
1. My Inner Debate on a Third Child and What I Have Come to Realize
2. Mini Ep: My EXCITING, BIG Announcement!
3. Talking About All the Things with The Rare Life's Madeline Cheney

Looking forward to seeing you all back here in 2025!

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

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 ways we never expected. We reflect on our shared experience of initially retreating from our communities after receiving devastating news, a natural but isolating response to overwhelming grief. We also discuss the transformative journey that followed as we found purpose, strength, and connection in advocacy and community support.

Ashley shares her family’s path from diagnosis to their current reality, highlighting the challenges and triumphs of raising a child with a rare and terminal disease. From navigating clinical trials to building awareness for Sanfilippo research, and then navigating divorce in the midst of it. Ashley’s story is a testament to the resilience and unwavering love of rare disease families.

Follow Sadie's journey on instagram
Learn more about Sanfilippo syndrome here
Shop Sadie Rae merch here (Proceeds to to Cure Sanfilippo Foundation)

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

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 behavioral needs. We discuss the unique challenges these families face, from planning for financial security to co-parenting with empathy, and how to approach these transitions with strength and clarity. Join us for this heartfelt conversation that sheds light on support systems and resources designed to help families move forward with resilience.

Learn more about Special Family Transitions
Follow Mary Ann on instagram: @specialfamilytransitions
Special Family Transitions YouTube Channel
Low Priced Mini Course Mastermind

*MARK YOUR CALENDARS*
My first children's book, Soaring Together: A Butterfly Family's Story of Discovery, Love, and Resilience, will be available for purchase on 11/11/24!

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

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

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

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 to school support, Daniel explains how each form of advocacy plays a vital role in making an impact, whether you’re new to advocacy or a seasoned advocate looking to expand your influence. We explore how these various types empower families, patients, and communities to drive change at both a personal and systemic level.

Tune in to gain valuable insights on how you can take actionable steps in your advocacy journey, no matter where you are in your path, and learn more about the incredible work of Global Genes in uniting the global rare disease community.

Daniel's 8 Stages of Advocacy Article
Learn more about Daniel DeFabio

Register for Global Genes Patient Advocacy Summit
Learn how to tell your story
Beginners guide to rare disease

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause