Lewisville, NC - When Madison Potts was 10 months old she had open heart surgery to repair narrowings in her pulmonary arteries and holes between her right and left atrium.
“After the open heart surgery the doctors said they wanted to test for Williams Syndrome and I had never heard of it,” said Theresa Potts, Madison’s mother. “They mentioned mental retardation and I said ‘not my baby.’”
For almost 10 years, Madison has been living with Williams Syndrome, a genetic disorder that remains virtually unknown to the general public, educators and many doctors. To help raise awareness and funds, the Williams Syndrome Association (WSA) is sponsoring the first ever Williams Syndrome Awareness Week scheduled for May 9-15 across the country.
“It is important for the Williams Syndrome Association to raise awareness and funds so that doctors and researchers can learn more and unlock the mysteries of Williams Syndrome,” said Potts. “The Williams Syndrome Association is an organization that was started by a Mom of a child with Williams Syndrome who realized the need for a group to provide educational information to families, doctors, and teachers of individuals with Williams Syndrome.”
Williams Syndrome affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.
These occur side by side with striking verbal abilities, highly social personalities and an affinity for music. Children with Williams Syndrome need costly, ongoing medical care and early interventions that may not be covered by insurance or state funding.
Today, Madison’s heart is fine but she and her family have to manage Madison’s medical and developmental delays, sensitive hearing, as well as learning disabilities.
“We are fortunate that Madison only needed one surgery to repair her heart and is doing excellent from a cardiac standpoint,”
Despite all of that, Madison is a true joy to be around with her bubbly personality. “She never meets a stranger and once someone meets Madison she remains in their hearts forever,” said her mom. “Many people have said, “It is hard to have a bad day around Madison”. She truly is a “ray of sunshine”.”
The Williams Syndrome Association encourages donations on its website. Money raised goes to fund critical programs that can lead to new insights about the disorder and workings of the brain- particularly in language and spatial processing and may also contribute to greater understanding of common problems such as hypertension and anxiety, which affect millions of Americans. Please visit www.williams-
About the Williams Syndrome Association
The Williams Syndrome Association (WSA) is a volunteer organization formed in 1982 by family members of people living with the disorder. In an economy where many non-profit organizations are struggling, the Williams Syndrome Association is growing. The organization is the most comprehensive resource for people and families living with Williams Syndrome as well as doctors, researchers and educators. For more information on the Williams Syndrome Association, please visit www.williams-
