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12. Caroline Kiefer - A Mother's Fight: Rare Disease (GAND) and Breast Cancer

12. Caroline Kiefer - A Mother's Fight: Rare Disease (GAND) and Breast Cancer

Jun 2025
56 min
Rare Disease
GATAD2B-Associated Neurodevelopmental Disorder (GAND)
Child
Severe

Caroline Kiefer shares her incredible story of 17 years advocating for her daughter Alana with GATAD2B-associated neurodevelopmental disorder, while also battling her own breast cancer diagnosis.

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Caroline Radley - A Mother's Fight: Rare Disease (SANDS) and Breast Cancer

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About This Episode

In this extraordinary episode, host Lisa McKelvey speaks with Caroline Kiefer about facing every parent's worst nightmare - dealing with her daughter Alana's rare disease diagnosis while simultaneously battling her own breast cancer. Caroline has spent 17 years advocating for Alana, who has GATAD2B-associated neurodevelopmental disorder (GAND), a rare genetic condition.

Caroline shares how she managed her own cancer treatment while advocating for her child's complex medical needs. She discusses the emotional and physical challenges of being both patient and caregiver, the logistics of managing multiple medical appointments, and the support systems that helped her family through this incredibly difficult time.

The conversation explores the rare disease GAND, the challenges of finding appropriate medical care, and how Caroline balanced her own health needs with her child's requirements. She shares insights about maintaining hope when facing multiple health crises and the importance of self-care for caregiving parents.

Caroline's story demonstrates that even when life presents seemingly impossible challenges, the human spirit can find ways to persevere, fight, and ultimately triumph. Her journey offers inspiration and practical wisdom for families facing their own multiple health battles.

Tags

rare disease
genetic condition
cancer
parent advocacy
dual diagnosis

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