Tay-Sachs Disease: A Father’s Story of Diagnosis, Parenting, and Purpose
Inside the Children's Hospital
Release Date: 05/13/2026
Tay-Sachs Disease: A Father’s Story of Diagnosis, Parenting, and Purpose
Inside the Children's Hospital
In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease. Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition. As a physician, Matt was trained to solve problems. As a parent, he was driven to...
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Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out
Inside the Children's Hospital
Supporting Families in Pediatric Healthcare: Insights from Parent Caregivers In this episode, we explore the experiences of parent caregivers navigating their child's complex health journeys, emphasizing the importance of advocacy, sharing stories, and hospital-family collaboration. Join us as these incredible parents discuss how they advocate for their children, the role of social media in building community, and what hospital leadership can do to improve family-centered care.Key topics covered: Why parents start sharing their child's medical journey online and the impact of community...
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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
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Inside the Children's Hospital
What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it’s often just the beginning. This week’s guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James’s medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family. Lyndsey and Katie reflect on the intense months surrounding transplant surgery,...
info_outlineIn this episode of Inside the Children’s Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease.
Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition.
As a physician, Matt was trained to solve problems. As a parent, he was driven to protect his child. But in the face of a disease with no cure, he and his wife had to redefine what “doing everything” truly meant.
From navigating complex medical decisions to choosing presence over intervention, Matt shares how their family embraced a different path—one centered on love, connection, and living fully in the time they had.
This conversation is a powerful reflection on grief, meaning, and the transformative impact of parenthood.
You’ll hear:
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What it was like to receive a Tay-Sachs diagnosis after reassuring genetic testing
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How a medical error changed the course of their family’s life
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The emotional tension between medical training and parental instinct
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What it means to “do everything” in a non-medical way
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How Havi communicated joy, preferences, and personality without words
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The role of community and parent-to-parent connection during grief
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How the family created meaningful traditions, including weekly “Shabirthdays”
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The impact of loss on identity, purpose, and career direction
What You’ll Learn in This Episode:
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What Tay-Sachs disease is and how it affects the body
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The limitations—and importance—of genetic screening
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Why preventive genetics is one of the most powerful tools in modern medicine
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How families can approach decision-making when facing life-limiting diagnoses
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The importance of redefining quality of life beyond clinical outcomes
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How grief and love can coexist—and shape the way we live
Resources Mentioned
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E-motion-Non-profit organization created by Myra that supports bereaved mothers
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JScreen (Genetic Testing & Education)
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57 Fridays (memoir by Myra Sack)
Connect with Us
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Subscribe: Never miss an episode on Apple Podcasts or Spotify.
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Visit insidethechildrenshospital.com to search stories and episodes easily
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Follow us on Instagram for updates and opportunities to connect with other parents
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Medical information provided is not a substitute for professional advice—please consult your care team.
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