D&L Trail bike ride supports families of Down syndrome
Squinting in the bright noonday sun, Sarah Neary smiled, her 5-mile bike trek Saturday on the D&L Trail in Slatington complete.
Satisfied by her accomplishment during the first social gathering of the Eastern Pennsylvania Down Syndrome Center in more than a year, the 17 year-old Bethlehem resident said biking on the trail wasn’t the best part of her day.
Being among her friends was. “I love being here with my parents and seeing so many faces,” she said.
Born with Down syndrome, Sarah was among 130 riders of all ages who turned out at Slatington Airport on Saturday morning to ride the trail and embrace one another’s company again for the first time since before COVID19 shut down gatherings and upended so many lives.
The Revolutions for Inclusion event was also intended as a vehicle to honor Sandro Micocci, 45, an EPDSC board member who died nearly a year ago from injuries sustained when he was struck by a speeding motorist while biking.
The gathering was the brainchild of Micocci, a doctor of physical therapy and avid cyclist whose daughter Isabella, 9, was one of many children with Down syndrome who took to the trail Saturday.
“He was a fierce advocate for his daughter,” said Jessica Micocci, his wife of more than 12 years.
Laura Neary, Sarah’s mother, said Sandro Micocci was dedicated to the center and helping those it served.
“He was a good human being,” she said.
The center, a 501(c)(3)
nonprofit based in Trexlertown that provides support services and yearly evaluations for those with Down syndrome, is a lifeline for so many, she said.
“It has done wonderful things for us,” she said.
EPDSC serves 200 to 300 individuals and their families, said Kerri DiDario, executive director.
Adding a cycling event to their
slate of annual gatherings was a goal of Micocci’s that would have happened in 2020 had it not been for the pandemic, she said.
“It was kind of his dream,” DiDario said.
Prior to its creation more than 20 years ago, Neary and her husband, Steve, would have had to drive far away to find support groups that focus on Down syndrome, a genetic disorder
which can lead to intellectual disabilities and challenges with socialization and motor skills, as well as thyroid and heart disease.
The center gives them a local hub to network with other families facing similar challenges, she said.
Without it, “it would be much harder because you’d feel alone,” Neary said.
In addition to annual gatherings
such as a summer picnic, Christmas party, and Buddy Walk — an initiative of the National Down Syndrome Society which will be held this year on Oct. 2 at Cedar Crest College — the center also has volunteer medical practitioners who provide social, medical, emotional, educational and mental health evaluations annually.
And the checkups can be done more often as needed, said Dr. Teresa Romano, a board member and doctor of pediatric emergency medicine at Lehigh Valley Hospital.
They are supplemental to the routine ones they receive from their family pediatrician, she said.
Challenges facing children with Down syndrome like her daughter Ashley, 8, are wide-ranging and include more than struggles with social abilities, she said. Stamina and muscle tone are also concerns.
“Their hands are smaller and their muscles are weaker; it can make it harder to write,” Romano said.
The center, she continued, assists families with establishing goals associated with the results of their evaluations and can work with the school where their child attends to ensure that the school’s goals mesh with theirs.
“You want to know that the goals the schools are working on are appropriate for the child,” she said.
Romano said that Ashley last year met a goal she and her husband, Jake, made for her — to ride a bicycle independently.
Being among each other again Saturday after a year apart allowed them to renew connections, she said.
And for Ashley and her friends to feel welcomed.
“This is a place of utter acceptance,” Romano said.
And where the dream of Sandro Micocci on Saturday became reality.
But he wouldn’t take any credit for it, his wife Jessica said.
“We did it,” she said he would say.