43
Event promotes acceptance of those with Down syndrome
By Bob Jackson
BOARDMAN
Being a mother of 7-year-old twins has been an up-and-down experience for Amy and Joe DeSantis.
That’s because one of the twins, their daughter Giada, was born normal and healthy, while her brother, Quintino, was born with Down syndrome.
“We didn’t know about it in advance,” said Amy. “It was extremely challenging. It’s a roller coaster of emotions when you find out.”
The DeSantis family, who live in Poland, were among more than 1,500 people who took part in Saturday’s Buddy Walk of the Valley at the Shops at Boardman Park. It was one of more than 250 walk events in cities across America and around the world taking place through October, which is Down Syndrome Awareness Month.
The walks are designed to promote acceptance and inclusion of people with Down syndrome, which arises from a chromosome disorder. It causes intellectual and physical abnormalities, usually including short stature and a broad facial profile.
Amy said Quintino had a host of other complex medical problems when he was born, causing him to remain in the hospital for some six months before he was released.
“So when he got out, we went right into fight mode,” she said. “We didn’t have time to do anything else.”
Danielle Procopio, event coordinator, said one of nearly every 700 babies born in the United States has Down syndrome. There is no known cause or cure.
“The one word we never use for Quintino is ‘can’t,’” Amy said. “He can and will do everything his sister does. People with Down syndrome aren’t disabled – they’re just abled differently. They do things at their own pace.”
Amy said Giada and Quintino are typically close twins.
“He is her biggest hero and she is his biggest cheerleader,” she said. “He’s changing the world one hug and one smile at a time.”
She said Giada and Quintino attended kindergarten at Poland Union Elementary School last year, and both will enter first grade there in the fall.
Krista Smith of New Middletown was also at the Buddy Walk with her husband, Kevin, and their 3-year-old son, Wesley, who has Down syndrome. An event like the Buddy Walk and an organization like the Down Syndrome Association of the Valley are invaluable ways of connecting with other parents who are in the same situation.
“It’s scary when you first hear that diagnosis,” she said. “We didn’t know what to do to give our son more opportunities so he could achieve as much as possible. One of the most important things is just having someone to talk to about it.”
For all the challenges that come with raising a son with Down syndrome, Krista said there are also blessings.
“He has the ability to make anyone smile,” she said of her son. “He’s really in tune with other people’s emotions. If somebody needs a hug, he knows and he gives them one.”
Like the DeSantis family, Amy said she and her husband didn’t know in advance that Wesley would be born with DS. He was diagnosed at 3 weeks old.
“It’s not hereditary. It’s a fluke,” she said. “If you look at the demographics, it does not discriminate, that’s for sure. It doesn’t matter your race, religion or anything else.”
Procopio, whose 2-year-old daughter, Elisa, has DS, also said events like the Buddy Walk provide an opportunity to meet other parents and share experiences.
“To come out here and see a 20-year-old girl with Down syndrome dancing and having so much fun allows me to see that my daughter has a bright future ahead of her,” she said.
The Buddy Walk, now in its ninth year, is the DSAV’s largest fundraising event, and its largest event overall each year, Procopio said. This year’s fundraising goal was $100,000, but its importance goes beyond dollar signs.
“It means different things to different people,” Procopio said. “For our DS people, it lets them see that there are other people out there who can relate to them and who understand their journey. It’s also a way to celebrate what makes them special.”
Down Syndrome Association of the Valley serves families in 13 Ohio counties, including Mahoning, Columbiana, Trumbull and Ashtabula. It also serves families in Lawrence, Mercer and seven other counties in Pennsylvania.
“Our vision is for people with Down syndrome to reach their full potential as active participants in an inclusive society which embraces and values their abilities,” said spokeswoman Lindsey Morris.