Growing Up with Chronic Intestinal Pseudo-Obstruction

For many families navigating chronic illness, it's hard to imagine what the future might look like for their child.

This week on Inside the Children's Hospital, Katie Taylor sits down with Vincent Rosche, a patient advocate, fitness enthusiast, and survivor who has spent most of his life navigating complex medical challenges. Diagnosed with chronic intestinal pseudo-obstruction (CIPO) at just 9 months old, Vincent grew up with feeding tubes, central lines, frequent hospitalizations, and even battled thyroid cancer as a teenager.

Today, Vincent works as the Community Engagement Coordinator for the Oley Foundation, connecting patients and families receiving home nutrition support with resources, education, and peer support.

In this inspiring conversation, Vincent shares:

• His earliest memories of growing up in the hospital • The profound impact Child Life Specialists and therapy dogs had on his experience • What his parents did that made the biggest difference during difficult times • Navigating school while managing complex medical needs • Learning to advocate for himself as a patient • How fitness transformed his health and confidence • Becoming a bodybuilding competitor despite lifelong health challenges • The importance of community, connection, and peer support • Resources available through the Oley Foundation for pediatric and adult patients

⏰ Timestamps

00:00 Introduction 00:50 Vincent's diagnosis and medical journey 02:52 Life today: advocacy, fitness, and dogs 04:02 Therapy dogs and Child Life memories 05:43 Earliest hospital experiences 07:14 The role of family and support 10:21 Advice for parents navigating chronic illness 17:34 School and growing up medically complex 23:24 Learning self-advocacy 28:20 Discovering fitness 32:59 Becoming a personal trainer 36:15 Competitive bodybuilding 37:59 Joining the Oley Foundation 40:23 Peer support and patient advocacy 45:12 Resources for families 49:49 How to connect with Vincent 51:05 Lessons learned and proudest accomplishments 58:47 A message of hope for parents 01:00:00 Closing

Vincent offers a powerful message to parents who are in the thick of it right now: you're doing better than you think, and your child remembers your love more than your mistakes.

Whether you're a parent, caregiver, healthcare professional, or someone living with a chronic condition, this conversation is filled with hope, perspective, and practical wisdom.

Learn more about the Oley Foundation at https://oley.org

Connect with Vincent: Instagram: @chronically_fit_life Facebook: Vincent Rosche

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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:

Chronic Illness, Rare Disease, Patient Advocacy, Medical Parenting, Pediatric Healthcare, Feeding Tube, TPN, Chronic Intestinal Pseudo-Obstruction, Child Life Specialist, Resilience