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Family Stories from Parents of CYSHCN

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. A traveling exhibit featuring these family stories is available for display at events or venues. Please contact info@exhibitenvoy.org.

Young Asian mom holding up the care map for her sons with special health care needs.

Meet Stephen and Edward from Alameda County, Calif. Stephen and Edward live with Hunter syndrome.

A mom and her adult son with special health care needs hold up a copy of his care map.

Meet Derek from Shingletown, Calif. Derek lives with spina bifida, hydrocephalus, a neurogenic bowel and bladder, and bilateral clubbed feet.

A girl with special health care needs wearing a hijab is seated in her wheelchair outside her home in a rural California town. She and her mother and stepfather are holding her care map.

Meet Savitri from Dunlap, Calif. Savitri lives with cerebral palsy, developmental delays, seizures, and spastic quadriplegia.

A young boy with special health care needs and his mother hold up his care map.

Meet Evan, who lives at Beale Air Force Base, Calif. Evan lives with neurofibromatosis, including physical and speech delays.

A young girl with Down syndrome and other special health care needs and her mother hold up a copy of her care map.

Meet Isabella from San Marcos, Calif. Isabella lives with Down syndrome, developmental delays, and a heart defect.

A boy with special health care needs sits on his father's lap, while his mother, seated next to him, holds up his care map.

Meet Daniel from Ontario, Calif. Daniel lives with neurofibromatosis.

Twin girls with special health care needs are held by their parents while standing next to their grandfather. They are outside, next to a fence, their faces reflecting the sunset. The girls are holding a copy of their care map.

Meet Celeste and Alexia from Marysville, Calif. Celeste and Alexia live with 22q deletion syndrome.

Young brothers with special health care needs stand on either side of their mother while she holds a copy of their care map.

Meet Emmett and Cohen from Grass Valley, Calif. Emmett and Cohen live with type 1 diabetes.

A young girl with special health care needs and her mother hold up a copy of her care map. There is an adult man also standing with them.

Meet Kathryn from Fresno, Calif. Kathryn lives with hydrocephalus, cerebral palsy, periventricular leukomalasia, agenisis of the corpus callosum, and cortical visual impairment.

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