Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support
Inside the Children's HospitalShow Notes
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 Instagram: @childlifeoncall + @insidethechildrenshospital
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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.
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
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