Sickboy

The Unseen Battles of a Miracle Child and His Mother: CHARGE Syndrome/17p13.1 Microduplication Syndrome


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What happens when life throws a curveball straight after the final inning? This Monday, the boys sit down with Alexis Simon, a superhero mom who's been catching life's toughest pitches. After a picture-perfect pregnancy, Alexis's world turned upside down when her son, Theo, was born with a constellation of rare and complex health issues. Imagine finding out your newborn, who seemed perfectly healthy, is suddenly fighting for life with a ticking clock. Alexis opens up about the rollercoaster of being admitted to the hospital during the pandemic for Theo's failure to thrive and the evolution of family support through this journey. Theo, a little warrior with a heart as mighty as his challenges, has been to the OR 23 times, yet his superpower is his unyielding happiness. Despite battling CHARGE syndrome, a one-in-six-billion rarity, and a relentless form of epilepsy, his smile remains undefeated. As Theo approaches his fourth birthday, Alexis shares the story of his heart - both the literal hole and the metaphorical fullness of it. Strap in for a tale of love, resilience, and the unbreakable bond between a mother and her extraordinary son.
*17p13.1 microduplication syndrome is a rare genetic condition characterized by a variety of symptoms. Only a few cases have been reported in the literature, and as such, it is not fully understood.
Join the post-episode conversation over on Discord! https://discord.gg/expeUDN
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