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Episode 58: Kelly Kearley - PTEN Hamartoma Tumor Syndrome

Kelly is the mother of Austin, a teenager with PTEN-Hamartoma Tumor Syndrome. She shares her profound journey of navigating life as a parent of a child with a rare disease, battling the healthcare system, and finding joy in small, everyday moments. Kelly’s story highlights both the struggles and triumphs of caregiving, offering insights into navigating the medical system, managing mental health, and finding a new normal. Through resilience, advocacy, and self-discovery, she has turned her challenges into a mission to support others in the PTEN community.

The song that Kelly chose is Stronger by Kelly Clarkson.

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Sylvain Berthelot Sylvain Berthelot

Episode 55: Laura Will - Polymicrogyria

Laura shares her experience as the mother of Alden, a child living with polymicrogyria, a rare brain malformation. With striking honesty, she speaks to the challenges, unexpected joys, and the lessons she's learned about resilience and acceptance. Laura’s narrative illustrates the struggles of parenting a medically complex child, from grappling with sleep deprivation to fighting for appropriate resources in the school system. Yet, through it all, her unwavering love for Alden and her fierce advocacy for his dignity and well-being shine through.

The song Laura chose is What a Wonderful World by Louis Armstrong.

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