Family advocates for daughter with rare genetic disease
The family of Addison Taylor, a 7-year-old diagnosed with a rare genetic disorder called Prader-Willi syndrome, along with their employer, FGS, LLC of La Plata, will host their annual One Small Step/Paint the Park Blue for PWS fundraiser for Prader-Willi research Saturday, Aug. 12 at Regency Furniture Stadium.
The Taylors — including mother Michelle, father Curtis and brother Darryn, 14, of King George, Va. — eliminate junk food from their house as much as possible in order to keep Addison’s food temptations at bay. The complex disorder’s key trait is an overwhelming desire to eat to satiate an insatiable appetite. Along with causing low muscle tone and cognitive disabilities, the results can lead to chronic overeating and life-threatening obesity. According to the Prader-Willi Syndrome Association, it is thought that one in 12,000 to 15,000 people worldwide has the syndrome.
The family hopes the fundraiser will increase public knowledge of the disease as well as raise funds for its cure. Before the Southern Maryland Blue Crabs game versus the Long Island Ducks begins, families of individuals with Prader-Willi syndrome will walk the field around 6 p.m. as an informational video plays on the field.
Addie will throw the first pitch of the game. Informational tables will be set up on the concourse throughout the game with information about Prader-Willi syndrome. One hundred percent of donations will go directly to research through the Foundation of Prader-Willi Research.
Addison Taylor, 7, was diagnosed with a rare genetic disorder called Prader-Willi syndrome soon after she was born. Her family and their employer, FGS, LLC hosts an annual fundraiser for Prader-Willi research at Regency Furniture Stadium to spread awareness and raise funds for the disease.