Katie Grashow with daughter Ada Mae
Katie Beardsley Grashow ’01 and her husband, Jon, spent much of their daughter Ada Mae’s first five years running her to doctors’ offices and trying to understand and help her through her unusual condition.
Though she had ups and downs in her development, at age four, Ada experienced a sudden regression. She stopped talking and making eye contact, lost her fine motor and gross motor coordination, and lost her strength and control to the point that she could barely sit or stand.
In 2014, Ada was diagnosed with a rare genetic disorder, Phelan-McDermid syndrome. The diagnosis cleared the way for the Grashows to find information and support to help their daughter and advocate on her behalf.
Since that time, they established a foundation, World of Mae, to support adaptations for Ada’s daily care. They also plan to create a nonprofit community center that will serve as a safe haven for families with special needs.
Last year, the foundation held its first major event to raise awareness about disorders like Phelan-McDermid syndrome and raise funds for Ada’s care.
The second annual World of Mae 5K and 1 Mile Fun Run will take place October 10, 2015, at Hartwood Acres Park in Pittsburgh. Both courses are handicap friendly, and live musicians play every half-mile along each course. The event will also include free face painting, performances by Weird
Eric, and hula hoop entertainment, as well as a basket raffle.
Those who wish to participate should
register on the Run Signup website by September 25 to receive a free World of Mae T-shirt.
More of Ada’s story can be found on the
World of Mae Facebook page. A detailed story about the Grashows (Katie, Jon, Ada Mae, and little sister Wilhelmina) and the challenges they’ve faced appears on the
Seaver Autism Center website.