"I thought my job was to save my daughter, but I realized my job was to show her how to live with strength and resilience." – Dr. Maggie Kang

 

We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.

In this powerful episode, Dr. Maggie Kang shares her deeply personal journey as a physician and a mother navigating her daughter’s rare disease diagnosis, Neuromyelitis Optica Spectrum Disorder (NMOSD). She discusses the emotional and medical challenges she faced, her transition into advocacy, and how she now supports families through life coaching.

In an insightful conversation, Katie and Maggie explore the complexities of grief, resilience, and advocacy. Maggie opens up about the difficult moments in her daughter’s diagnosis, how she learned to trust her instincts, and the importance of both self-care and community in the rare disease journey. Together, they discuss the emotional weight of parenting a child with a chronic illness and the ways families can empower themselves in the healthcare system. 

What You’ll Take Away from This Episode:

🏥 Navigating the Medical System: She shares how she advocated for faster testing, sought expert opinions, and utilized her connections to expedite care.

 

 

🤝 The Importance of Community: Connecting with other rare disease parents provided knowledge, support, and hope for the future.

 

 

💔 Processing Grief and Change: Katie and Maggie discuss the emotional toll of rare disease parenting and how healing often begins after leaving the hospital.

 

 

📢 Advocacy Matters: Maggie's push for better understanding of NMOSD has helped bring awareness and improve care options for future patients.

 

 

💙 Self-Care for Caregivers: She emphasizes how caring for oneself is critical in sustaining long-term caregiving and preventing burnout.

 

 

 

Connect With Dr. Maggie Kang

Link to Dr. Maggie's Website

Dr.Maggie's TEDx Talk

Nell's Book

 

❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 

🎙️Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 

The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

Keywords:  NMOSD, Female Physician, Doctor Mom, Pediatrics, Child Life Specialist