CANFIELD, Ohio (WYTV) – Approximately 40,000 Americans have Down syndrome, according to the National Down Syndrome Society.
A Canfield family recently learned their youngest child has the disorder and they want to share their story to raise awareness, just in time for World Down Syndrome Day on Saturday.
Ethan Procopio is protective of his baby sister, Elisa.
“I snuggle her often and kiss her,” the 4-year-old said.
Elisa is a “go with the flow” baby .She has been through a lot in her short life.
“She had to have open heart surgery on Halloween. Heart defects are very common with children with Down syndrome,” Danielle Procopio of Canfield said.
She and her husband, Dan, did not know Elisa had Down syndrome until she was born. The couple did not know what to think when Elisa was diagnosed.
“I didn’t know if she was going to have a short life span or how limited she was going to be,” Danielle said.
While she was in the hospital with her newborn, she heard someone use the word “retarded.” It was not in reference to her daughter, but hearing that word struck a nerve.
“It was just so fresh, so hurtful to hear that because I realize that is a word people use to mean something stupid or something is ridiculous and now it is a word that is aimed at my daughter,” Danielle said.
The mother of two said she is not the word police. She just wants to raise awareness about Down syndrome in Valley.
“I think awareness is big, but also I think some people may think it might never happen or that it could not happen,” Dan Procopio said.
Danielle said hospital employees told her Elisa was the first child born with Down Syndrome in a couple of years.
“One in every 691 children is actually born with Down syndrome,” said Michele Jones, co-founder of the Down Syndrome Association of the Valley, or DSAV.
Her daughter has Down syndrome.
DSAV has a center for success in Boardman, where it provides services, resources, education and parent mentors to 200 families in the Valley. The annual Buddy Walk at the Shops in Boardman Park is one way DSAV gets it message out to the community by letting people know kids with Down syndrome are able to do the same things as other kids, but it just takes them a little longer to get to that point.
This year’s Buddy Walk is Aug. 8.
“People with Down syndrome, they still have the same feelings, they still have the same hopes, the same dreams and we really just want to afford everyone that equal opportunity,” Jones said.
“She is a baby right now. She has a bottle. The next step will be crawling. The next step will be walking,” Dan Procopio said.
The Procopio’s said notes and Facebook messages from parents who have kids with Down syndrome are encouraging and act as another resource. Elisa gets physical and occupational therapy. Certain toys, like a ball, are therapeutic.
The Procopio’s are still learning about Down syndrome. Watching Elisa’s milestones is motivation and make them proud parents.
On Saturday, which is World Down Syndrome Day, the DSAV is having a party for its families. It is a chance for everyone to get together, share their stories and answer questions for each other.
The Mahoning County Board of Developmental Disabilities is another community resource. It has a number of services, including community and residential, and officials there said it really depends on what a family is looking for.
To learn more about the MCBDD program, call 330-797-2825. For more information on the Down Syndrome Association of the Valley, visit the DSAV website.