For one family, learning more about Down syndrome was the key

Weeks into her second pregnancy, Susana Quinonez of Calverton was blindsided when she learned the baby boy she was carrying would have Down Syndrome.

The road ahead for Ms. Quinonez and her husband, Hernan, was uncertain.

“I was so scared,” she said in a recent interview. “It was supposed to be joyful.”

Instead, at every turn at each new doctor’s appointment, Ms. Quinonez felt overwhelmed by a long list of what-ifs to consider: an increased risk of childhood leukemia, sleep apnea, Alzheimer’s disease, and the possibility her baby would be born with a congenital heart defect, requiring surgery.

But projected health concerns were just one aspect of what the couple was facing. “We didn’t have any experience with Down syndrome,” Ms. Quinonez said. “It was completely new to us.”

What they really wanted was insight into what day-to-day life would look like with their son, Benjamin, who is now 4 years old.

Online resources and communities on social media offered some help, but Ms. Quinonez said it was difficult to find local connections.

That all changed when Ms. Quinonez was eight months pregnant with Benjamin and met a woman in a waiting room who has a daughter with Down syndrome.

“My husband said, ‘Let’s talk to her,’ and it changed everything,” she said.

From there, Ms. Quinonez connected with an advocacy group who at the time had been working to bring GiGi’s playhouse to Long Island.

“It’s a big community,” she said. “Now we’re all connected and we’re there for each other.”

Founded in 2003, GiGi’s Playhouse is a Down syndrome achievement center that offers free educational, therapeutic and career development for individuals with Down syndrome. The newest location in Patchogue marks the 52nd GiGi’s Playhouse and first of its kind on Long Island, with programming available for families from the East End to Nassau County.

The programs, which focus on communication, fine motor skills, social skills and language, will be available for all ages, from newborn to adult, and their parents, too.

“There aren’t a lot of free services, and there are even less programs out there for teens and adults,” said Michael Cirigliano of Patchogue, who serves as the board president of the new chapter.

His passion for advocacy was set into motion when his 9-year-old niece was born with Down syndrome. “As I’ve gotten to know more families, I’m learning more and more about the need,” he said.

In addition to specialized programming made possible mostly on a volunteer basis, Mr. Cirigliano said he’s hoping the organization can help spread awareness and education.

“It’s a place where [expecting parents] can come to talk about the diagnosis and get assurance that everything is going to be OK — they can live a normal life,” he said.

It’s the exact thing an expecting mom like Ms. Quinonez was seeking out four years ago.

“We’re looking forward to seeing it all come together,” Ms. Quinonez said of the new center, which will host a virtual grand opening on March 20, the day before World Down Syndrome Day.

Later this spring, with Benjamin starting preschool and her older son, Brandon, returning to in-person learning in Riverhead, Ms. Quinonez said she’s hoping to get more involved with the organization.

“All the families we’re going to meet have experience and maybe I can bring my experience to other families. It’s great to be able to relate to other people,” she said, adding that she wants other families to see how far her own son has come, learning the alphabet, numbers, enjoying puzzles and running around like any other 4-year-old.

“I was not expecting it to be this joyful,” Ms. Quinonez said. “He’s such a smart boy, capable of learning anything when you take the time to teach him. I would never change him.”

WHAT ELSE TO KNOW

According to the Centers for Disease Control & Prevention, Down syndrome is the most common chromosomal condition, occurring in about 1 in every 700 babies born in the United States each year.

World Down Syndrome Day is observed March 21 to signify the three copies of chromosome 21 individuals with the condition have.

For more information on GiGi’s Playhouse, visit gigisplayhouse.org/longisland.