Hartwood Acres 5K to help Indiana Township girl battle rare disorder
Ada Mae Grashow is an energetic 6-year-old with bright blue eyes, a loving personality and a rare medical history.
In January 2014, Ada was diagnosed with Phelan-McDermid syndrome, a genetic disorder with only 600 to 1,000 known cases that is caused by the mutation of a gene responsible for the formation of neuronal synapses.
Many people with Phelan-McDermid syndrome have seizures, low muscle tone, poor sleeping habits, language delays and gastrointestinal issues.
Ada, 6, of Indiana Township, is missing the base of a gene that is involved in the processes needed for learning and memory, and it is unknown if Ada will progress beyond her current functional age of about 12 months.
“You can look at it for the things you don't have … for us, for the rest of our lives, we're going to focus on the strengths,” said Ada's mother, Katie Grashow, of Indiana Township.
The family, including Katie; her husband, Jon Grashow; and their youngest daughter, Wilhelmina, 3, will celebrate Ada's abilities at the first World of Mae 5K run/walk and 1-mile kids fun run Oct. 18, at Hartwood Acres.
“We want it to be one time per year where we're celebrating people's individual strengths and having a fun time,” Katie Grashow said.
The event will include some of Ada's favorite things, including music with performances along the race course of her favorite songs that range from “Five Little Ducks” to Katy Perry's “Roar” and Pearl Jam songs.
Lee Anne Miller of Ross Township is one of Ada's music therapists and volunteered her time to perform during the event because music is one of the ways Ada communicates with others.
“I have a musical conversation with her, that's what I do,” Miller said about their therapy sessions. “It's amazing how much can be communicated through facial expressions.
“Ada is not (Phelan-McDermid syndrome); she is a really spunky 6-year-old kid.”
Students from Falk Laboratory School at the University of Pittsburgh also will participate in the event. They learned about Ada's story in May, when Katie Grashow visited a sixth-grade science class during the genetics unit to talk about Phelan-McDermid syndrome.
The Falk students were so touched by Ada's story that one student donated money she received for her bat mitzvah to the World of Mae, and a group of students will be attending the World of Mae event to participate in the race and perform with life-size puppets they made.
“These kids are trying to promote awareness,” said Adrienne Baker of Baldwin, a teacher at Falk. “(The event) is creating awareness for Ada, and the Falk family wants to be there to do that.”
All of the money raised through World of Mae will be used to support Ada's medical, therapeutic and adaptive expenses and eventually will be used to create a nonprofit community center for families and children with special needs.
“This has changed our perspective on what's important,” Katie Grashow said. “We take every day and want it to be as joyful as it can be.”
Bethany Hofstetter is a staff writer for Trib Total Media. She can be reached at 724-772-6364 or email@example.com.