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Rare Lung Disease, Epilepsy and the Diagnostic Journey

Inside the Children's Hospital

Release Date: 01/28/2026

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Inside the Children's Hospital

What happens when a diagnosis labeled “lethal” doesn’t tell the full story? In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte’s journey with Trisomy 13—a diagnosis often associated with limited survival and quality of life. After receiving devastating news over the phone while at work, Nicole and her husband were told their daughter likely wouldn’t survive. But instead of accepting that narrative, they sought out information, second opinions, and a care team willing to partner with them. From...

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Inside the Children's Hospital

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Inside the Children's Hospital

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Inside the Children's Hospital

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Inside the Children's Hospital

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Inside the Children's Hospital

Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury. In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family’s journey following a diagnosis of hypoxic ischemic encephalopathy (HIE). What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child. Brady opens up about: The shock and uncertainty of those early days Navigating life as a “medical dad.” The...

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Inside the Children's Hospital

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Inside the Children's Hospital

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Inside the Children's Hospital

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Inside the Children's Hospital

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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.

 

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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