Explore these videos of parents and caregivers sharing their experiences caring for children and youth with special health care needs. Each video highlights part of a family’s care journey. Through these stories, families can find support, helpful information, and practical insights.
Stacey Hickey
Stacey is a devoted parent partner and champion whose perspective is shaped by raising two daughters with autism. Through navigating years of missed and delayed diagnoses, she brings a compassionate understanding of how autism can present differently in girls and the importance of early recognition and support.
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Morgan Kowalski
Drawing from her experience as a parent, Morgan brings a thoughtful leadership perspective shaped by raising her son, born at 25 weeks and living with multiple complex medical needs. Through coordinating care across numerous specialists and health systems, she has developed practical approaches to staying organized and informed; insights she hopes can support other families navigating the complexities of caring for medically complex children.
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Nicole Guysi
Nicole is a devoted parent whose engagement and leadership are deeply shaped by her lived experience raising her family. Her journey is informed by her 15-year-old daughter, who loves being outdoors and has Cohen Syndrome—giving Nicole a personal, compassionate perspective on navigating systems of care and supporting children through the pediatric to adult health care transition process.
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Laurie Shook
Laurie is a dedicated parent leader whose perspective is shaped by raising a child with complex medical needs. Through years of navigating chronic illness and frequent medical visits, she has learned to trust her instincts and speak up when something doesn’t feel right. Her experience underscores the vital role caregivers play as members of the care team and the importance of ongoing engagement in seeking answers and improving care.
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Mattanah Israel
Mattanah is a committed parent leader who draws on her lived experience raising a daughter with special health care needs who is 18.5 years old. Through navigating care coordination, insurance questions, and complex care planning, she has seen firsthand the value of connecting families with social workers and patient champions to help make navigating systems of care feel more manageable. This has empowered Mattanah to become an Ambassador for Advocacy for her family and community.
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This project is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $150,000, with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by CDC/HHS, or the U.S. Government.
Last Updated
06/08/2026
Source
American Academy of Pediatrics