In this moving episode, our guest Aimee shares her family’s journey after learning that her daughter Caroline was diagnosed with Aicardi syndrome, a rare genetic disorder that primarily affects girls. Aimee speaks with honesty and courage as she shares about the shocking moment of diagnosis during a routine anatomy scan, navigating high-risk pregnancy appointments, and the overwhelming mix of fear and gratitude when Caroline finally came home from the hospital. She discusses the challenges, the unexpected blessings, and what it means to adjust dreams while embracing the joy of the present.

This conversation offers hope, perspective, and a deeper understanding of what families face when rare diagnoses turn their world upside down.

Learn more about Aicardi Syndrome here.

Sponsored by the West Virginia Department of Human Services, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and Produced by the West Virginia University Center for Excellence in Disabilities.

Episode Transcript Here

If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

When Gennifer and her husband got a late-night call about an unexpected baby, they had no idea it would lead them to a life filled with challenges, resilience, and unconditional love. In this heartfelt episode, Gennifer shares the powerful story of adopting her son Weylon, born with a brain injury and complex medical needs. From navigating seizures and hospital stays to building a strong family bond and advocating fiercely for his care, Gennifer opens up about the realities of raising a child with disabilities, while balancing a large, blended family. Her journey is one of perseverance, community support, and redefining what’s possible when love leads the way.

Sponsored by the West Virginia Department of Human Services, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and Produced by the West Virginia University Center for Excellence in Disabilities.

Episode Transcript Here

If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

**Content warning: episode discusses child loss.**

In this powerful episode, Samantha Coyne—WVU Law student, LEND trainee, and devoted mother—shares the story of her daughter Hadleigh, whose life and unexpected passing reshaped Samantha’s entire sense of identity and purpose. From a complicated pregnancy and a rare diagnosis of Noonan syndrome to joyful moments of motherhood and exhausting advocacy, Samantha takes us on a journey of love, loss and resilience. She opens up about the isolation, medical challenges and systemic gaps that families of children with disabilities often face. Her reflections resonate with any caregiver whose world revolves around their child, especially when that world is shattered. This conversation is a raw and honest look at what comes next when the child you lived for is suddenly gone.

Sponsored by the West Virginia Department of Human Services, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and Produced by the West Virginia University Center for Excellence in Disabilities.

Episode Transcript Here

If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu