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22. Zoe Chung: Raising a Baby with CMS While Facing Breast Cancer

22. Zoe Chung: Raising a Baby with CMS While Facing Breast Cancer

Apr 2026
50 min
Rare Disease
Congenital Myasthenic Syndrome (CMS)
Infant
Severe

Zoe Chung shares her extraordinary story of raising her daughter Sophia, who was diagnosed with Congenital Myasthenic Syndrome, while simultaneously facing her own breast cancer diagnosis.

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About This Episode

In this remarkable episode of The Long Road Podcast, host Lisa McKelvey speaks with Zoe Chung about navigating two life-altering medical challenges at once — raising her daughter Sophia with Congenital Myasthenic Syndrome (CMS) while also undergoing treatment for her own breast cancer diagnosis.

Zoe shares the extraordinary demands of being both a caregiver for a child with complex medical needs and a cancer patient herself. She opens up about the emotional weight of managing her daughter's rare neuromuscular condition while fighting for her own health, and the strength required to show up for Sophia every day.

Congenital Myasthenic Syndrome is a rare inherited neuromuscular disorder that affects the connection between nerve and muscle, causing weakness and fatigue. Zoe's story highlights the power of parental love, the importance of support systems, and the resilience that emerges when families face the unimaginable.

Tags

rare disease
genetic condition
neuromuscular
parent advocacy
dual diagnosis
cancer

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