Diagnosis to Determination: A Mother’s Journey with Aicardi Syndrome
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Diagnosis to Determination: A Mother’s Journey with Aicardi Syndrome
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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