ISSUES AND PURPOSE.Chronic illness is a way of life for parents of children with Sturge-Weber syndrome (S WS), a rare progressive congenital disease that has as its definingfeature a port wine stain. This case study describes the experience of one family living with a child with S WS.CONCLUSIONS. This family's struggle with a dtvastating syndrome and the ways in which they coped and maintained hope inform all those who care for families living with a chronically ill, disabled child. PRACTICE IMPLICATIONS. Social support is critical for families facing overwhelming care needs.Families also need anticipato y guidance about child rearing, developmental milestones, decision making, and coping strategies. Additionally, families may need help in mobilizing professional and family resources and in effectively using available services.
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