Summary: In today's podcast, Josh Fyman tells the story of how their family decided to move Penny to a residential setting after a period of intense medical issues that nearly cost her her life. "The situation deteriorated slowly," he says, "and then all at once." Josh was open about how that decision has impacted them and, most importantly, Penny. He discusses the shock of how it happened, the guilt he's felt, others' judgements, how his team of family and advisors helped them to make that decision and the immediate aftermath. It's a sensitive subject for all caregivers of severely disabled children and young adults, and Josh was honest and incredibly informative in how it's affected him as a father. He is generous with his advice for other parents facing similar circumstances. Josh lives with his wife Avigael and young son Morgan on Long Island. His seven year old daughter Penny has lived for the past 3 1/2 years at St. Mary's Hospital for Children. Penny was diagnosed with Aicardi Syndrome, a very rare seizure disorder. Although the range of severity is large, Penny's disabilities are the most severe, and in addition to seizures she is completely dependent on caregivers for all life activities.
