Each May, the Walk for Williams is an important event in the Urbana community, marking Williams Syndrome Awareness month. Williams Syndrome is a rare genetic disorder that affects families in the Urbana area, including Tatum Ridgley, a 9-year-old who attends Centerville Elementary School.
“Being a part of the Walk for Williams is something that has been very special to me over the past seven years,” said Villages of Urbana resident Lisa Ridgley. Her daughter, Tatum, not only has Williams Syndrome, but also has congenital heart disease, and on a yearly basis is sedated to check the changes to her heart.
“Tatum is so special to me as well as our local community. Her smile alone is enough to brighten the worst of days,” she said.
On May 9, the Walk for Williams reached record participation. More than 500 participants came out, including about 43 individuals diagnosed with Williams syndrome. Ridgley participated with Tatum and their friends Erin and Sophie Rupolo. Sophie, 6, was diagnosed with Williams syndrome at 3 months old.
At the Walk for Williams, Erin, who is the chair of The Mid-Atlantic Region’s Williams Syndrome Association, presented Sophie’s doctor with an award because of his dedication to Williams syndrome patients and their families. Dr. Kenneth Rosenbaum, a pediatric genetic specialist at Children’s National Health System, has treated Sophie since her diagnosis.
“Dr. Rosenbaum called me up late on a Sunday evening, right after we received the news that Sophie had Williams syndrome. His kindness and candor, and the way he assured me that Sophie would have a good life is undescribable,” Rupolo said. “It is difficult to overstate the relief that a family feels when they find a medical professional who can offer expertise for our children, but who is also caring and kind.”
Rupolo added that living with a child with Williams syndrome is incredibly rewarding. “The journey of a special needs parent definitely comes with its challenges and its struggles, however, we could not be more blessed with what Sophie has brought us in life. She surprises us every day with her accomplishments. She continues to teach us and those around her what living is all about and we thank her every day for adding such beauty to our lives!”
The Mid-Atlantic Region’s Williams Syndrome Association put on the event, which raised just under $40,000. All funds go directly towards neurocognitive research, which helps provide information for properly treating and educating Williams syndrome patients. Ridgley explained how crucial this event is for children such as Sophie and Tatum.
“Although research into Williams syndrome has overlap and potential to help children with autism, Williams syndrome is still classified as a rare disease and does not receive the funding that other conditions do. It is our families — members of the WSA — who work tirelessly to raise the necessary funds,” Ridgley said.
Ridgley added that the Williams Syndrome Association is also earmarking funds for a specific study that could save lives of many Williams syndrome children. The study involves the sudden death during surgery/anesthesia, a phenomenon that is overdue to be studied. “This phenomenon has been both random and completely unexplained until now. NIH funding for these studies as a rare disease has been halted,” she said.
Donation can be made online through the end of June at https://williams-syndrome.org/frederick.