Williams Syndrome (WS) affects an estimated 20,000 to 30,000 people in the United States. Families of affected individuals encounter major struggles. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding. As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential, and few are able to work a “full-time” job or earn a large enough salary to be self-sustaining.
But unlike many disorders that can make connecting with your child difficult, individuals with WS tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable, and their special personalities and perseverance help make dreams come true. Many adults with WS contribute to their communities as volunteers or work at senior homes and libraries or as store greeters or veterinary aides – no matter what they are doing, they seem to make a special impact.