Rare Lung Disease, Epilepsy and the Diagnostic Journey

Rare Lung Disease, Epilepsy and the Diagnostic Journey

49:28 Jan 28, 2026
About this episode
When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today's guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals. This episode explores navigating rare disease without clear answers, the life-changing impact of compassionate child life support, supporting siblings through medical trauma, and how rituals, play, and community help families find hope and meaning in the midst of chaos. Download our free Children's Hospital Passport to help empower your child and family during hospital stays. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.   Resources from today's episode: Medical Support:  Stanford Children's Health  Undiagnosed Diseases Network Nonprofit & Community Support: Live Like JoJo Foundation The Meg Foundation (Pediatric Pain & Poke Plans)  Brave Bears Club (Epilepsy Support) Child Life Mommy CHYP  Connect with Brittany Follow Brittany's journey as she shares life as a medical mom, military spouse, and advocate.    Connect & Support from Child Life On Call  Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes
Select an episode
0:00 0:00