Constable: Antioch mom spurs Down syndrome network

After a tense pregnancy that included a stress test, a miscarriage scare and fears about a potential heart ailment, Jenny and Nicolino Di Benedetto of Antioch were ready to share the Oct. 2, 2012, birth of their son, Gianluca, with his big sister, grandparents, their extended families and friends.

“When he was born, we were just relieved that we didn't have to worry about health issues anymore,” Jenny remembers. She sent a birth email to her boss along the lines of, “He's here. He's great. He's perfect.”

Then a doctor cleared the room of everyone but the parents and their newborn. He said there was a chance the baby, nicknamed Luca, had Down syndrome.

“He started showing us features,” the mom remembers. Luca had a “sandal gap” between his big toe and the others, and a single straight palmar crease traversing his palm instead of the typical lines. The baby's ears appeared lower on his head, and his body lacked muscle tone. The parents wouldn't know if Luca had Down syndrome until results of a blood test came back four days later.

“(The doctor) had nothing to give us. Not even a pamphlet,” Jenny says. She remembers the doctor leaving them to ponder the possibilities after offering the family advice: “By the way, you'll love him no matter what.”

The couple say they weren't prepared.

“Neither of us had any experience with Down syndrome,” says Nicolino, a sports writer for STATS, a sports data company in Northbrook, and co-host of a radio soccer show.

A hospital social worker gave the Di Benedettos online printouts about Down syndrome, and a poem called “Welcome to Holland,” which equates the birth of a baby with Down syndrome to a couple who plan a fabulous Italian vacation and end up instead in Holland, where things are different but still enjoyable.

“I didn't know what to say. I got emotional talking about it,” Jenny remembers.

Thanks to a connection Jenny made online with fellow mothers Jen Jacob of Iowa and Heather Bradley of Minnesota, parents and others seeking information about Down syndrome now have the Down Syndrome Diagnosis Network, or DSDN. Two years ago on March 21, World Down Syndrome Day, the moms launched dsdiagnosisnetwork.org, a not-for-profit online community that connects, supports and provides information to more than 2,000 families. Jenny says they call themselves the “Rockin' Moms,” because their “kids are rockin' an extra chromosome.”

As senior vice president of strategic services at the Lockwood Group medical communications firm, it fell naturally to Jenny to become secretary and director of medical outreach for the network. Her knowledge and connection were put to use when Luca started having spasms at about 9 months old, a rare condition that can affect any child.

“With everything he (Luca) had learned, it was basically hitting a reset button,” Nicolino says. “It was all gone.”

Luca's infantile spasms robbed him of the ability to sit up, eat or even be active.

“He was somewhere else,” his dad recalls.

“The hardest thing was no more smiling, no more laughing,” Jenny says.

Two other families in the Down Syndrome Diagnosis Network had children with infantile spasms. The Di Benedettos went to hospitals in Milwaukee, Chicago and Boston, and tried five different medications before settling on a treatment that involved a ketogenic diet with no sugars and lots of fat. After less than a year on that diet, Luca's spasms stopped.

“You hate the idea of being a helicopter parent, but you have to be the advocate. You have to fight for your kid,” Nicolino says.

The couple added another son, Massimo, whom they call Max, to the family last June. The healthy toddler plays with Gabriella, his 5-year-old sister who goes by “Gabi,” and older brother, Luca. Three-year-old Luca receives occupational, speech and physical therapy, and can move around the house with help of a walker.

The family also gets help from Jenny's parents, Chuck and Linda Miller, who live on the Wisconsin side of Cross Lake, their home visible from the Di Benedettos' lakeside deck. Linda Miller is a retired registered nurse and helps with Luca's care.

“Thank goodness we have families,” Linda Miller says.

The Di Benedettos have extended their already large list of relatives with support from their DSDN family.

“That has been huge,” Nicolino says, noting how his wife found immediate suggestions after posting videos of Luca's spasms on the network.

“It's been amazing what we've been able to accomplish in two years,” says Jenny, noting their network includes 50 smaller groups that deal with specific issues and questions.

The theme for this year's World Down Syndrome Day was inclusion, and the Di Benedettos say they've learned that lesson from watching their three children play together and from the families they've met through the DSDN.

“We see it,” says Jenny, a speaker for the National Association for Down Syndrome in Park Ridge. “Our lives have inspired us to have that empathy.”