Age Group:All Ages
One in five American children has a special health care need – a chronic physical, developmental, behavioral, or emotional condition that requires more than routine health care. If it takes a village to raise a healthy child, then what does it take to raise a child with a special need? In 2016, the Lucile Packard Foundation for Children’s Health enlisted Deanne Fitzmaurice, a Pulitzer Prize-winning photographer, to find out. Deanne shadowed 10 families living throughout California – from rural farms to large urban centers to the suburbs surrounding Silicon Valley – who provide care for their children with special needs every day and every night. The children, who range in age from two to 21, have diagnoses ranging from type 1 diabetes to spina bifidia to neurofibromatosis.All of these parents have much in common. They must navigate a complex and fragmented system of care, from the crushing piles of paperwork, to financial stress, to long drives for appointments booked months in advance. But, more than anything, the most common denominator among these parents is the deepest, most beautiful sense of all-giving love for their children.