Photos By Danielle D’Aquila
When Suzanne Merinuk gave birth to a child with Down syndrome, the diagnosis was a complete surprise.
“I didn’t know when I delivered her that she was going to have Down syndrome,” Merinuk said of her daughter Eve. “Some people know in advance. I didn’t.”
Caught off guard and not knowing anything about raising a child with Down syndrome, Merinuk said she immediately began looking for answers.
“I’m an information person,” she said. “I just like knowledge.”
Merinuk, who grew up in Woodbury and still lives there with her family, soon came across the Down Syndrome Association of Southern New Jersey (DSASNJ), though they were then operating under the name KIIDS (Knowledge and Information about Individuals with Down Syndrome). The connections she found there have now lasted more than two decades, and the benefits of belonging to the group have been immeasurable, especially for Eve.
“It makes her a more well-rounded person,” Merinuk said of her daughter and all of the kids involved with the organization. “They’ve been exposed to so many wonderful things because we have great parents.”
Eve, now 21, works at the Riverwinds Community Center in West Deptford and attends classes at Rowan College of South Jersey through a program called the Adult Center for Transition, or ACT.
On Friday, March 21, Eve was featured as a guest bartender during the organization’s annual fundraising event at Double Nickel Brewing Co. in Pennsauken.
“I love it!” Eve said of working the event that night, when she was joined behind the bar by her cousin Adam Naugle.
The event was held on World Down Syndrome Day and features the organization’s members with Down syndrome serving drinks to customers in an effort to raise funds for their programs. This is their third year for the event, and their first time at Double Nickel.
“The night was a resounding success!” said Dria Law, one of DSASNJ’s co-chairs. “We are thrilled that it exceeded our expectations both in turnout and in fundraising. “
Law said the total numbers from the event are still being tabulated, but she said they had more than 1,000 people attend over the course of the night.
Ahead of the event, supporters could sponsor individual bartender participants with donations, which led to them starting the night with over $13,000 raised.
But that total should pale in comparison to the money raised at the brewery, as tips at the bars, raffles and other fund raising efforts will all be added to the total.
“The money raised will enable us to pursue and achieve some important goals we have as an organization, including additional educational and support-related programming for the individuals and families we serve,” Law said. “We are so grateful to Double Nickel, our sponsors and volunteers, and the amazing community of support that surrounds us!”
Merinuk said she’s no longer officially on DSASNJ’s board, but she does serve on the committee for the bartending event.
“The fundraising that we do, a big part of it goes to creating activities for all different age groups of the kids, and now young adults,” she said. “I’m absolutely in awe, with so much gratitude for all the people that came out to support our kids. It’s just – tears of joy.”
In past roles with the organization, Merinuk said she had been involved with bringing in guest speakers like doctors and therapists to help herself and other members to gain even more information.
Other initiatives organized by the group include trips to national Down syndrome conferences, outings and events for the kids, scholarships, and health funds for members who get sick.
“It’s really about bonding and information sharing,” Merinuk said. “Because the kids are together so many times in a year growing up, they just become really good friends often. It’s just a beautiful thing.”
The organization now counts more than 120 families from all over South Jersey as members.
Merinuk said a big part of the group’s mission is the work they do through outreach coordinators, who are there for people who find themselves in the same position she was once in.
She said the outreach team is there with advice to be offered before and after the baby is born.
“If somebody finds out they have a diagnosis of Down syndrome, we have coordinators they can talk to prenatally,” Merinuk said. “Once we find out a baby’s delivered we’ll send out a care package.”
Merinuk said the benefits of the group are shared equally between the kids, their parents and their extended families.
She said that the organization offers so much, there’s something for everyone to get what they need from it.
“The families that are involved care so deeply and want their kids to be out in the community and thriving, and busy and learning,” she said. “Our goal is always just to reach out and get more members and hope that our members take advantage of the group.”