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Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support

Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support

Author: Katie Taylor, Certified Child Life Specialist July 29, 2026 Duration: 33:53
Inside the Children's Hospital
KidsKids & FamilyFamilyFitnessHealthHealth & FitnessMedicineParenting

When your child receives a diagnosis, everything changes. In this heartfelt episode, Katie Taylor welcomes back Jessica Patay, founder of We Are Brave Together, to discuss the emotional realities of caregiving, raising a son with Prader-Willi syndrome and autism, and why supporting the mental health of caregiving moms is essential.

Jessica shares how a mentor mom transformed her own journey after her son's diagnosis and how that experience inspired her to create We Are Brave Together, a thriving community supporting thousands of caregiving mothers worldwide. She also introduces her newest book, Suddenly Brave Together, a collection of letters written by experienced caregiving moms to families navigating a new diagnosis.

Together, Katie and Jessica explore the importance of community, finding hope through shared experiences, navigating the transition into adult healthcare, and why caregivers deserve just as much support as the children they care for.

Whether you're parenting a child with a rare disease, disability, medical complexity, neurodivergence, or chronic illness, this conversation is a reminder that you never have to walk this journey alone.

In This Episode:

1:58 – Meet Jessica Patay and her family's journey with Prader-Willi syndrome
5:45 – What is We Are Brave Together?
8:10 – Jessica's new book, Suddenly Brave Together
11:05 – The letter Jessica wrote to newly diagnosed moms
13:10 – Why caregiver mental health matters
15:55 – The mentor mom who changed everything
17:15 – How moms can become Connection Circle leaders
21:30 – Supporting moms navigating behavioral challenges
23:15 – Where to find Jessica's books and resources
24:15 – Transitioning from pediatric to adult healthcare
27:45 – Why caregivers still need a village after childhood
30:45 – Creating spaces where caregivers feel seen, not judged
32:45 – Why supporting moms strengthens the entire family

Resources Mentioned

• We Are Brave Together: https://www.wearebravetogether.org
 • Learn about Connection Circles and caregiver retreats
• Suddenly Brave Together and Becoming Brave Together

Connect with Us

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your care team for guidance specific to your child and family.

Keywords: 

Prader-Willi syndrome, We Are Brave Together, caregiver mental health, caregiving moms, special needs parenting, medically complex children, rare disease parenting, autism parenting, caregiver support, parent support community, new diagnosis support, disability parenting, family caregiving, pediatric to adult healthcare transition, Connection Circles, caregiver burnout, parenting after diagnosis, medically complex parenting, Jessica Patay, caregiving community

 


Hosted by Katie Taylor, a Certified Child Life Specialist, Inside the Children's Hospital is a quiet space for the often unspoken journey of pediatric illness. This podcast moves beyond the clinical to explore the human heart of the hospital, offering conversations that feel more like a shared cup of coffee in a waiting room than a formal interview. You'll hear directly from parents and caregivers who articulate the complex mix of fear, resilience, and love they experience, while pediatric nurses, doctors, and therapists provide their unique professional perspectives on fostering healing and normalcy. The discussions naturally delve into the practicalities of family life disrupted, the emotional weight carried by all involved, and the small, profound moments of hope that sustain people. It’s a resource for anyone connected to a child’s health challenge, whether you're a family member seeking solidarity, a friend looking to understand, or simply someone interested in the intersection of medicine and humanity. Each episode aims to validate the listener's own feelings, whether they are in the midst of a crisis or reflecting on one, by presenting these authentic narratives without sugarcoating yet always with profound compassion. Tune in to find a sense of community and a deeper appreciation for the delicate, powerful work happening within those walls.
Author: Language: English Episodes: 50

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