EAST LIVERPOOL - As president of the new Tri-State Down syndrome support group, Nikki D'Atri said the message is simple.
"It's not a bad thing," D'Atri said about those with the syndrome and for the parents dealing with it. She added that the goal is to bring people together and share ideas, offer support and enjoy happy moments.
For D'Atri, it's been a busy few months since July 2009 when the Wellsville resident put together a press release announcing plans for a new support group.
Members of the newly created Tri-State Down syndrome support group, The Ups of Downs, held their first Christmas party in December at the East Liverpool Moose Lodge. (Submitted photo)
Since that early meeting, they now have an official name - The Ups of Downs.
"I knew there were people in this area that didn't want to travel to Pittsburgh, Youngstown or down south to Jefferson County," D'Atri noted. "So, I contacted the people I know about the new group and was encouraged because of their interest."
Until the arrival of The Ups of Downs, there was no Down syndrome support group in Columbiana County.
According to information from the National Down Syndrome Society:
- Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
- Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
- There are more than 400,000 people living with Down syndrome in the United States.
- Down syndrome occurs in people of all races and economic levels.
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
- A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
- People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many ways.
D'Atri has a lot of support of her own with Jan Joy serving as vice president, Lisa Derrington as secretary and Doug Verzella as treasurer.
"The goal is to reach out to families and parents of children with Down syndrome and expectant parents of a child with Down syndrome," Derrington said. "We want to promote acceptance and increase community knowledge about the syndrome."
While serious in nature, the group does have its fair share of fun.
The group held its first Christmas party in mid-December at the East Liverpool Moose Lodge.
D'Atri said the lodge has been very supportive through the years and has a long history of being a corporate sponsor.
Derrington also offered her thanks to the Moose Lodge. "They donated the use of their building, and the men and women of the Moose donated funds to help Santa with the cost of his gifts to the kids," she said.
Some future plans include an Easter egg hunt for group members, and the Buddy Walk is set for Sept. 18 at Thompson Park.
In the meantime, D'Atri said fundraising is underway so the group can file for non-profit status with the state.
Some seven families are part of the local group now, and D'Atri said anyone interested can become involved.
"We're a small group, but I think we will grow over time," D'Atri said. "There are a lot of families that don't get involved in any group, and that's fine, but this group is not solely about numbers. It's about friendships, sharing information and letting people know there is support out there."
The next meeting for The Ups of Downs is set for Jan. 19 at the East Liverpool Moose Lodge at 129 East Third St.
Anyone who can't attend and wants information about the group, or anyone with questions, can call D'Atri at 330-532-3684. Donations and other inquires can be mailed to: The Ups of Downs, 220 Seventh Street, Wellsville, Ohio, 43968.