Episode 103: Epilepsy Advocate Kelly Cervantes

Episode 103: Epilepsy Advocate Kelly Cervantes

Overview

CW: This episode includes discussion of grief over the loss of a child.

It is dedicated to Adelaide's memory.

In May 2016, Kelly Cervantes and her family received two life-changing pieces of news: her husband, Miguel, had landed the starring role of Alexander Hamilton in Hamilton: An American Musical in Chicago; and their then-7-months-old baby girl, Adelaide, was diagnosed with epilepsy — and eventually, infantile spasms — a severe form of childhood epilepsy. She transitioned from being the family’s primary bread-winner to a stay-at-home mom and full-time caregiver. Eventually, she found her voice and purpose with the non-profit Citizens United for Research in Epilepsy (CURE), where she is currently a board member. The family hoped that science would catch up to their daughter…but that was not meant to be. Adelaide passed away due to complications of an as-yet-still-unidentified neuro-degenerative disorder…5 days shy of her 4th birthday, and just weeks before Kelly was to receive a WEGO Health Award for her contributions to patient advocacy blogging for Inchstones. In a demonstration of incredible resilience, Kelly made a public promise to her daughter: even though Adelaide’s battle was over, she would continue to fight for families affected by medically-complex disorders. By organizing fundraising campaigns, speaking at epilepsy events across the country, continuing her writing, and hosting CURE’s podcast Seizing Life, she makes sure Adelaide’s struggles were not in vain, and keeps hope alive for all the Adelaides to come. Her hope is that in publicly sharing her family’s journey with epilepsy and the real-life moments that come with parenting and grieving a special needs child, other parents in similar situations will learn they are not alone.

Takeaway

Transcript

Kelly Cervantes Hamilton Uninvisible Pod Seizing Life CURE

Transcript coming soon!

In the meantime, check out these other episodes on epilepsy:

42: Aditi Juneja

102: Natalie Y. Beavers

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