By Jaimie Julia Winters
When Nell Santos learned in 2012 that she was expecting a long-awaited baby girl after giving birth to two boys, she was overjoyed. Nicolle arrived on Oct. 19, 2022, in an uncomplicated delivery, but doctors quickly discovered she had been born with Down syndrome.
“On that day, I received the most precious gift God could give me. We were all excited and eagerly waiting for her to be born,” Nell said. “When she arrived, we learned she had Down syndrome. And in that moment, guided by God, we embraced the news with joy and a heart full of love.”
From the very beginning, Nell met the challenges of raising a child with special needs with unwavering grace and determination.
Down syndrome is named after the English physician John Langdon Down, who first described and categorized the common features of the condition in 1866 in his paper “Observations on an Ethnic Classification of Idiots.” Since that time, much has changed in perception about the diagnosis. But the challenges for parents are real.
Babies with Down syndrome typically experience developmental delays, reaching milestones such as sitting, crawling, and walking later than their peers. These delays—usually mild to moderate—can affect gross motor, fine motor, and speech development. While every child progresses at their own pace, many begin sitting independently a few months later than typical, may crawl several months later, and often start walking closer to 18–24 months. Early intervention services, including physical, occupational, and speech therapy, play a key role in supporting their development and helping them gain skills as early as possible.
As Nicolle continued to grow and thrive with Nell by her side, Nell began hearing more stories from other families navigating similar journeys.
‘Many feel sad or are in denial’
“I realized that receiving the diagnosis is not always easy. Many feel sad or are in denial,” she said, explaining how she began mentoring parents who felt overwhelmed or unsure. “I made myself available to anyone facing that confusing time and helped them navigate intervention services that are available.”
Down syndrome is the most common chromosomal condition in the United States, with an estimated one in every seven hundred babies born with the condition each year, according to the National Down Syndrome Society. Yet despite its prevalence, it remains one of the least funded major genetic conditions by the National Institutes of Health. That’s why support and advocacy on the local level are needed so desperately.
Driven by the need for stronger support and connection, Nell founded EPIC (Extraordinary Parents of Incredible Children), a nonprofit dedicated to helping families of children with Down syndrome and disabilities in her community. The group began eight years ago with just four families, and today that number has grown to over 100 families.
On Oct. 15, the Town of Kearny honored the group with a Down Syndrome Awareness Proclamation Ceremony.
Nicolle now shines
Nicolle, now a seventh grader mainstreamed and thriving in the Kearny school district, has become an advocate in her own right. In 2020, her photo, along with 500 other people with Down syndrome was featured on a Times Square billboard for Down Syndrome Awareness Month in October.
After undergoing open-heart surgery, she spoke at a National Down Syndrome Society event in support of equal access to organ transplants for all. The issue is significant: according to the National Council on Disability, people with intellectual disabilities are rejected for organ transplants at disproportionately high rates. One study found that individuals with intellectual disabilities were 62% less likely to receive a kidney transplant.
And on a local level, “she inspires all the students she learns and interacts with every day,” Nell said. “She’s showing them that people with disabilities can go far and are mostly like any other teen.”
Nicolle’s journey has also deeply influenced her older brother, Matheo, who is now pursuing a career in teaching students with disabilities. He began as a summer teacher’s aide working with children with special needs and is currently earning his Master’s in Special Education. Although 38% of Americans know someone with Down syndrome, Matheo says many people never have the opportunity to experience the joy of truly knowing someone with the condition.
“Nicolle is an inspiration. She loves to dance and is so extroverted and welcoming,” he said.
For Nell, sharing lived experiences remains essential to helping families face challenges and find strength.
“The exchange of experiences brings us knowledge and enlightenment,” she said. “It motivates and inspires us not only to keep going, but to do so with joy—and to embrace a happy motherhood.”
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Her nonprofit, EPIC, hosts monthly meetings and inclusive community events, including its annual inclusive Christmas celebration at Lincoln School—this year on Dec. 13—where all students are invited. The group provides a safe space where parents, relatives, and volunteers can connect, support one another, and celebrate their children. The group caters to both English and Spanish-speaking families. EPIC offers meetings for children and adults at the Veterans Building on Belgrove Drive and also maintains an active WhatsApp chat group. Nell can be reached through EPIC’s Facebook page for anyone seeking support.
Today, children with Down syndrome can grow into productive adults with support. Most complete high school, more are going on to a postsecondary education, and a handful have even received graduate degrees. An increasing number of colleges and universities have programs that are specifically designed for differently-abled students, according to ThinkCollege.net. Some people with Down syndrome live independently or in an assisted independent arrangement, and a small but growing number have a romantic relationship and even get married. Many work, volunteer, and vote.
“Our goal is simple but powerful: to affirm the priceless value of every life, to offer emotional and practical support, and to remind every family that they are never alone,” Nell said.