Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story

📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica’s story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month.

What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together.

In this deeply moving episode, Jessica opens up about:

 

✅ Her son’s diagnosis with Prader-Willi Syndrome and the earliest signs

 

✅ The challenges of hypotonia, feeding tubes, and navigating early interventions

 

✅ How her family balances safety, structure, and joy with a life-altering genetic condition

 

✅ The impact of anxiety and food-seeking behaviors in PWS

 

✅ The emotional toll of parenting a medically complex child—and why self-care is essential

 

✅ Her mission to connect moms through retreats, support groups, and honest conversations

 

Whether you're a parent of a child with a rare diagnosis, a caregiver, or a child life specialist, this episode offers comfort, validation, and powerful insight.

 

Timestamps & Key Topics

⏱️ [00:00] – Meet Jessica Patay & Her Family
A mom of three from California and founder of We Are Brave Together

⏱️ [04:00] – Ryan’s Birth and First Signs Something Wasn’t Right
From a quiet newborn to a NICU stay, and the challenges of a delayed diagnosis

⏱️ [08:00] – Diagnosis: Prader-Willi Syndrome
How a Google search and a persistent dad led to answers

⏱️ [10:00] – The Emotional Impact of Diagnosis
The grief, the fog, and how Jessica slowly found strength

⏱️ [14:00] – Life with Feeding Tubes and Early Interventions
Occupational, speech, and physical therapy in the early years

⏱️ [19:00] – Living with PWS: Hypotonia, Delayed Milestones, and Growth Hormone
Ryan’s journey to walking at age three and building muscle

⏱️ [20:00] – When Food Becomes a Medical Emergency
How the insatiable food drive in PWS shapes daily life—and safety plans

⏱️ [24:00] – Creating a Safe Home for Ryan
Locked kitchens, food schedules, and adapting to his needs as he grows

⏱️ [26:00] – Rethinking Success: What Matters Most
The shift from pushing academics to prioritizing happiness, safety, and stability

⏱️ [29:00] – Parenting Through Anxiety and Fatigue
How PWS affects mental health—and how Jessica copes with it all

⏱️ [32:00] – Self-Care Without Shame
Why letting go of perfection and choosing peace is essential

⏱️ [38:00] – Founding We Are Brave Together
Jessica’s mission to combat caregiver isolation through connection and retreats

⏱️ [42:00] – How to Get Involved
Join support groups, start a chapter, and access online resources

⏱️ [44:00] – What Ryan Has Taught Jessica
A beautiful reflection on motherhood, perspective, and being changed for the better

Resources & Links

🌐 Learn More: We Are Brave Together 

📲 Follow Jessica on Instagram: @wearebravetogether

 🎙️ Listen to Jessica’s Podcast: Brave Together with Jessica Patay

📘 Explore Support for PWS: Prader-Willi California Foundation

 📱 Access Child Life Tools Anytime: SupportSpot App

 

Share Your Thoughts!

Were you moved by Jessica’s story? Are you a parent of a child with PWS or another complex diagnosis? We’d love to hear from you! Share this episode, tag us, and help other parents feel less alone.

🎧 Subscribe & Review: Every review helps more families find this supportive community.
🔗 Follow us on Instagram: @childlifeoncall
📩 Contact us: Host Katie Taylor and the team at SupportSpot
🎙️ Listen to More Episodes: Child Life On Call Podcast

 

The Child Life On Call Podcast is for informational and educational purpose