LOCAL SUPPORT At one time, parents seeking Down syndrome support groups had to travel to Pittsburgh or Cleveland. Today, thanks to two families’ efforts there is an association here in the

By HAROLD GWIN

VINDICATOR STAFF WRITER

VIENNA — Stephanie and Bill Champlin of Salem began looking for a local Down syndrome chapter with the birth of their son, William, a year ago.

They even searched the Internet but found nothing local.

William, who was diagnosed with the genetic disorder, just had his first birthday and it was only a week ago that Stephanie was on the Internet again, looking for a Down syndrome organization to which they could make a donation in their son’s name.

This time she found the newly formed Down Syndrome Association of the Valley.

“We were excited,” she said, adding that she immediately filled out the online membership form.

She soon got an e-mail response from Kelly Donadio, co-chairman of the local group, along with notice of the group’s very first member picnic Sunday.

The association can be found at www.dsav.org.

The Champlins didn’t let a little thing like a cold, wet afternoon prevent them from bringing William to the event held at the Litco International picnic grounds on Youngstown-Kingsville Road.

“There needs to be more education in this area, advocacy and support,” Stephanie said, explaining her interest in the association.

The couple had been brainstorming about what they could do on their own when they found out about the local association.

“We’re going to be the contact people in Salem,” Bill said.

Founders

Kelly Donadio and Michele Jones , along with husbands Chris Donadio and Ken Jones, launched the association just a few months ago.

Both have children with Down syndrome: The Donadios’ daughter, Marina, who will be 2 in October, and the Joneses’ daughter, Lauren, 3.

Kelly and Michele are co-chairmen. Chris is secretary and Ken is treasurer.

Both families had some contact with Down syndrome organizations in Cleveland and Pittsburgh but felt there was a need for some things here, Kelly said. Parental support for one another is a key factor, she said.

“We knew there were other families,” she said, noting the membership has grown quickly. Sunday’s picnic drew more than 100 people, despite the constant rain and temperatures hovering below 60 degrees.

These conditions didn’t prevent the children from having fun. Litco allowed the association to set up carnival games and a large, inflated bouncer in its warehouse where kids could jump up and down to their heart’s content. There was even a clown doing face paintings, and the line awaiting her services was long.

Parents’ support

“The parent-to-parent connection is a vital thing,” said Willie Hetrick, who, with her husband, Dick, and daughter, Katie, lives in Sharpsville.

The picnic was the Hetricks’ first connection with the association.

“It’s nice talking to other parents and encouraging them,” Willie said.

Katie, 15, will be a sophomore at Sharpsville High School this year and said math, reading and music are her favorite classes.

She likes singing with the chorus and helps manage the volleyball team. Katie is also a Girl Scout.

Having people in the association whose children are older and have been through the system and can offer advice to parents with young children is very beneficial, Kelly Donadio said.

“It’s also great for extended families,” Ken Jones said, noting that a number of aunts and uncles of children with Down syndrome made it a point to get to the picnic.

The group already delivers “new parent packets” to hospitals in northeastern Ohio and western Pennsylvania and has contacted all pediatricians and obstetricians in that same region informing them of its existence.

The association is also reaching out to local libraries to help disseminate information about Down syndrome and support programs for parents.

There are no membership fees to join the Down Syndrome Association of the Valley, but the group is having a Little Caesar’s Pizza fundraiser selling pizzas and cookie dough to provide funds for programs to benefit association members.

Sept. 12 is the last day to order, and deliveries will be Sept. 21.

For information, call Kelly Donadio at (330) 856-1541 or Michele Jones at (330) 856-2339, or e-mail info@dsav.org.

gwin@vindy.com