New podcast episode: Diagnosis to Determination
In this moving episode of the Adjusting the Sails podcast, 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.
Adjusting the Sails is a podcast about the lives and specific challenges children with special healthcare needs and other disabilities face along with their families, caregivers and service providers, and how to manage those challenges. The podcast is a platform for all disability-related topics to be discussed and serves as a mediator between families and caregivers, allowing them to share their stories and experiences. Adjusting the Sails features guest speakers, panelists and a variety of program representatives and service providers to offer education and training to the listener.
This podcast is sponsored by the West Virginia Department of Health and Human Resources, 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.
Opinions shared by the guests of the show are their own and do not necessarily represent the official views of the hosts, the Department of Human Services Office of Maternal Child and Family Health/Children with Special Health Care Needs Program, the West Virginia Family 2 Family Health Information Center, nor the West Virginia Center for Excellence in Disabilities.