This week on Seizing Life®, father and therapist Bud Hager discusses being the caregiver to a young daughter with a rare and complex medical condition. Bud discusses the daily responsibilities and the overarching emotional journey of parenting a child with a rare disease, and how it has transformed his life in both tangible and philosophical ways.
At the age of six months, Emma Hager began exhibiting signs of infantile spasms. Her parents, Bud and Maggie, were quick to get her to a physician, but they were not prepared for the devastating diagnosis that a series of medical tests would reveal. Emma was diagnosed with Pachygyria, a rare, neurologic condition affecting fewer than 1,000 people in the United States. Bud recounts receiving this heartbreaking diagnosis and discusses both the physical responsibilities and the emotional impacts of caring for a child with a complex medical condition. Bud shares his personal experiences and philosophy, and provides insights and advice on the caregiver’s journey.
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