By Todd Franko
One in 800 U.S. children is born with Down syndrome.
Luke Neer is one, and his mom, Christina, felt completely alone when he was born eight years ago.
“You feel like you’re the only one with Down syndrome because you don’t know anyone else,” said Christina. “You feel so alone.”
Talk to other moms, and more feelings are shared.
Shock is another — especially if you’re among the many parents whose pre-delivery tests do not detect Down.
Fear, denial, confusion, sorrow, medical uncertainty ... they can overwhelm a family at birth.
For years in the Valley, there was no support network for such families.
That connection was missing.
“It’s the biggest thing to have people who get it,” said Christina. “They understand what I’m going through.”
There was a picnic in 2007 — 15 or 20 families attended, Howland resident Kelly Donadio recalls.
An article in The Vindicator brought attention to that event and the group.
Then came a 2008 charity walk, the Buddy Walk, an event hosted through the National Down Syndrome Society. The Boardman event included an appearance by actor Chris Burke of the 1990s television show “Life Goes On.”
The 43-year-old is arguably the most recognized person diagnosed with Down syndrome.
That 2008 walk led to August’s 2009 walk; 95 participating families became 200 families.
Though the Down Syndrome Association of the Valley was born, there was just no home. DSAV was run out of host families’ kitchens. Meetings took place in libraries.
That changes this week.
DSAV will open its first home Thursday afternoon — the Center for Success in Parkside Place plaza on U.S. Route 224, just east of Mill Creek Park.
The opening continues a rocket-like ascension for the group.
“We’re fortunate [in the Valley] that these families got together and have the drive and contacts to get this going,” said Dr. Elena Rossi, director of neonatology with Akron Children’s at St. Elizabeth Hospital in Youngstown.
She says there’s a gap in what the medical profession can provide families in terms of spiritual and emotional needs that come with such a newborn.
As in the case of Kelly, Rossi is often the first doctor whom mothers delivering at St. E’s meet when they learn their child has Down syndrome.
She told Kelly about daughter Marina — the fourth child for Kelly and husband, Chris.
“I was shocked,” said Kelly, who is president and co-founder of DSAV. “I did not know what it meant. The mother instincts kicked in. I was concerned about Marina and what to do for her. I don’t want my child made fun of or left out of things.”
Kelly overcame her initial sorrow with this belief:
“There are no mistakes in life,” she said. “I believe this is what I am supposed to be doing in life. [Chris] and I feel like this was a calling.”
As example of that feeling is her partnership with another mom, Michele Jones, in establishing DSAV.
They both live in Howland. They have sons who are best friends. Those two best friends have younger sisters born with Down.
“These things don’t happen by accident,” Kelly said.
The pair have been a constant presence at the Boardman DSAV site, readying it for Thursday’s opening. Counter tops, wiring, desks, tables — an army of friends and family have helped out in every project.
“When I hear other [Down] groups’ histories, we’ve done in two years what other groups do in 10. It’s amazing. But it also speaks to the need that was here,” Kelly said.
Before the Donadio, Jones and Neer families, there were other Valley families with Down children. But they did not have a DSAV when their kids were growing up. But they are joining now.
“Families [are] coming alongside to help us achieve something they did not have,” said Kelly. “It’s very humbling.”
And new families keep finding them.
Michele rattles off the families’ counties and towns like a human GPS: Beaver and Greenville, Pa.; Belmont County, two counties south of here; Ashtabula County to the north; Portage County to the west.
“We’ve been able to get information and get resources, and we can bring that to the Valley,” said Michele. “But we’ve never had a footprint.
“This [building] is our footprint in the Valley.”
But getting Thursday’s unveiling completed is just the beginning. In the 10-county area they serve, there is one Down syndrome baby born every month, based on national averages, and not all are connected to DSAV.
They hope to implement a liaison program with every hospital in 10 counties to ensure families with Down babies have access to DSAV resources from the start.
“What we’re trying to get to [with hospitals] is the thought: ‘Baby — Down syndrome — DSAV,’ ” said Kelly. “It’s time-consuming and people-intensive to close the gaps.”
But from closed gaps can come new gifts.
Gifts like Luke.
“Luke has been a gift,” said Christina. “I know parents don’t think that when they get the first diagnosis. You don’t think of it as a gift.
“But if you’re around other parents of children with Down syndrome, you realize it much sooner. It’s a gift.”