In 1960, babies born with Down syndrome, a genetic condition characterized by an extra copy of the 21st chromosome, had an average life expectancy of about 10 years. But today, with increasing quality of health care, resources and education, many individuals born with Down syndrome are now living well into their 60s.
According to Jenna Stites, the executive director of the Miami Valley Down Syndrome Association, the landscape has changed dramatically for individuals with developmental disabilities.
“Babies born with Down syndrome often have various health conditions, including heart defects,” Stites says. “Many of these children and adults go through heart surgery and live long, wonderful lives, whereas decades ago medical intervention was more limited.”
This type of early intervention, coupled with other therapies, is today helping individuals with Down syndrome develop to their full potential.
Founded in 1977 by local parents, the Miami Valley Down Syndrome Association serves individuals with Down syndrome, their families and the community at large.
“We work to build community awareness,” Stites says, “because people are generally afraid of what they don’t understand.”
Working with families in 11 counties, the association offers monthly support meetings for parents, social and educational events and informational meetings to keep the community up to date on advancements and events.
“A lot of times, the negative stereotype is that people with Down syndrome can’t work or take care of themselves,” Stites says. “But they can and do succeed and are wonderful individuals. They are just like you and me, but with an extra chromosome.”
One of the more important goals of the association is to help parents who have a newly diagnosed child with Down syndrome.
“When parents find out they don’t know what to do,” Stites says. “We can connect them with other families and help them understand that it’s not a scary life, but a wonderful, joyful life they have ahead.”
Stites took on her role at the association 2 1/2 years ago, after finishing her doctorate in management and organizational studies.
“My first child was born with Down syndrome,” Stites says. “After my daughter was born we realized there wasn’t a lot of information available. The resources were scarce and we didn’t know any other parents of children with Down syndrome. We felt alone.”
Stites was delighted to find tremendous community support in Dayton and saw the opportunity to take a job that would make a difference, not only for the community but also for her daughter.
Primarily funded by individual and corporate donations, the Miami Valley Down Syndrome Association conducts several fundraisers throughout the year, the largest of these being the Buddy Walk, which will take place Sept. 16 at Fifth Third Field in Dayton. Stites describes the event as a “fantastic day of celebration” with 2,500 attendees.
“It’s a day to celebrate all that they have overcome,” Stites says. “It’s important for people to know that kids with Down syndrome grow up like any other child. My daughter goes to swimming lessons and plays with her friends. It’s not a doom and gloom type of life. It’s a wonderful journey I wouldn’t trade for anything.”
To receive more articles from Dayton Magazine sign-up for a complimentary subscription here: http://bit.ly/1l70sqL