Rare Lung Disease, Epilepsy and the Diagnostic Journey

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.

 

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Keywords:
Rare disease parenting, Medical motherhood, Medically complex child, Pediatric lung disease, Pediatric epilepsy, Intractable epilepsy, PICU parent experience, Military family healthcare, Parent advocacy in healthcare, Child life specialist support, Sibling support during hospitalization, Parenting after medical trauma, Coping with chronic illness, Undiagnosed disease journey, Hospital parent support

Medical information provided is not a substitute for professional advice—please consult your care team