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

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

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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.

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