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105: Losing Both of Her Daughters to a Rare Genetic Disorder
Description
Morgan Berry shares her story of becoming a mother to identical twin girls, Bailey Grace and Ally, whose lives would be shaped by an incredibly rare genetic disorder. What began as a seemingly normal pregnancy and the challenges of caring for newborn twins quickly turned into years of unanswered questions as Morgan noticed developmental delays and unusual seizure activity in both daughters. After countless appointments, extensive genetic testing, and a search for answers that eventually led them to the National Institutes of Health, the girls were diagnosed with HECW2, a disorder so rare that very little was known about what their futures might look like. As their medical needs became increasingly complex, Morgan found herself navigating around-the-clock care, difficult decisions about their quality of life, and the constant uncertainty of what might come next.
Morgan opens up about the emotional and physical toll of caring for her daughters, the complicated role her faith played throughout their illnesses, and the experience of adopting her son, James, from China while navigating an already overwhelming chapter of motherhood. She also reflects on being sexually assaulted during college, how that experience shaped her understanding of safety, intimacy, and relationships, and the ways unresolved trauma influenced the years that followed. Morgan discusses the pressure she felt to remain strong through her daughters' suffering, the difficult realities of making end-of-life decisions, and how years of living in survival mode affected her sense of identity. She also shares how her experiences with grief, trauma, and major changes in her personal life eventually led her to reevaluate what she believed about herself, her faith, and the life she wanted moving forward.
Morgan’s Links:
https://www.instagram.com/seedsandleaven
https://seedsandleaven.substack.com
Beyond the Monsters Socials:
https://www.instagram.com/beyondthemonsters
https://linktr.ee/BeyondtheMonsters
Disclaimer: This podcast shares personal experiences and educational discussion. It is not medical or mental health advice. Always consult a qualified professional regarding your own care.
Topic: Child Loss and Grief, Rare Genetic Disorders, SA, Medical Trauma, Healing After Loss, Childhood Disability and Chronic Illness, Motherhood
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