A rare genetic condition hasn’t dampened Elle Nauman’s gift for brightening others’ lives

By Susan Towers
Photograph by Carolyn Watson
From the May 2022 issue

Elle Nauman may know more students and teachers than anyone else at Cape Henlopen High School near Lewes. And those who’ve met the outgoing senior respond to the positive energy she radiates as well as her gentle nature — and her propensity to send text messages.

“All my friends text me after school,” Elle says, breaking into a broad smile that’s familiar to everyone who knows her. “She sends text messages to everyone, and they all message her back,” says her younger sister, Anna, a junior at Cape.

The big sister, who will graduate in June, has maintained her vibrant personality despite suffering from Phelan-McDermid syndrome, a rare genetic condition that causes a range of medical, intellectual and behavioral problems, according to the foundation that bears the condition’s name. Only about 2,800 people in the world have been diagnosed with it. Elle’s mom, Jenny Nauman, who is also an assistant superintendent in the school district, calls her daughter’s case mild, but says it brings challenges. Nonetheless, “Elle attacks life with a smile on her face,” says her father, John Nauman, business services director at Delaware Technical Community College’s campus in Dover. “It can’t be easy for her, but she gives it the college try. She doesn’t seem to be afraid of anything.”

Sports are Elle’s favorite activity at school, and give her a sense of belonging, her father says. She manages the girls’ volleyball team and plays on the co-ed unified senior basketball team for special needs students, for which she made the first basket of the season this year when Cape played the team from Dover High School. And “she cheers the loudest” at games, according to Principal Nikki Miller.

As part of a Sussex Consortium program focused on vocational training for special needs students, Elle no longer partakes of regular Cape classes, but she visits many classrooms when bringing around the coffee cart for the teachers. Through the consortium, Elle also has several jobs outside of school to help prepare her for 

the future, including ones at Beebe Healthcare and the Lewes Public Library. Her favorite, however, is helping teachers in the consortium pre-K class, Little Vikings. 

“I like the kids, and I like reading to them,” she says. “And I want to be a teacher’s assistant.”

Elle’s outgoing personality and knack for making friends has helped her bring an awareness of Phelan-McDermid syndrome to Delaware. When just 13 years old, she spoke before the state General Assembly at Legislative Hall. But “I wasn’t scared at all,” she says, remembering that day. “I liked being there. It was fun.”

Earlier this year, the Milton-area resident also helped raise money through the annual “Phelan Lucky” T-shirt campaign to benefit the PMS foundation, which supports research and improvements in the quality of life for those with the syndrome. Elle was this year’s poster girl for the “Phelan Lucky” fundraiser, and says she was happy to see so many people at Cape wearing “her” T-shirts.

The campaign was started in 2014 by Jennifer and Eric Randolph of Wilmington, whose son Jack also has the syndrome. Jack and Elle are two of four people in the state that have been diagnosed with the condition. The fundraiser has grown and now takes place throughout the United States and in a total of 17 countries. So far, it has raised nearly $700,000, with more than $100,000 of that amount coming this year. 

Friends and teachers calls Elle’s kindness heartwarming and inspirational.

“I’ve known Elle since the third grade,” says senior Owen Smith. “You can be having a bad day. Elle smiles and always makes you feel better.”

Lizzie Shea, who graduated last year and is a student at the University of Delaware, says Elle is sensitive to the feelings of others, something students notice and appreciate. “I was in the school mentoring program and was learning about students with disabilities when I got to know Elle,” Shea recalls. “I connected with her. She … inspired me to go into special ed.”

Physical education teacher and coach Jenn Hagan says, “Elle is always motivated and acts like a mini coach. I like that about her.” But for this special young woman, family is the most important part of her life. When asked what sport she likes best, she says it’s playing basketball — with her father. Elle’s mom adds that in the summer, the family hangs out on Dewey Beach where Anna works at a beach shack, renting umbrellas and chairs. The shack also has a basketball hoop, and although Elle and her mother often read together on the beach, it’s the hoop and Dad that draw her attention.

“We share a love of sports,” he says. “We watch hockey and tennis, and we watched the Olympics together. She knows football better than I.”

John and Jenny Nauman have dedicated themselves to supporting their daughters, to creating a strong family. Jenny says that when Elle was a small child, it became clear she wasn’t developing normally. Child Development Watch, a statewide early intervention program, screened her. Then the Naumans went to Nemours Children’s Hospital in Wilmington to find answers. It took years before genetic screening had advanced to where it was able to diagnose the rare syndrome. In the meantime, Elle received therapies and special education services. Though a senior at Cape, she will continue in the Sussex Consortium program until she is 21.

But it’s not just Elle who’s being taught. “I have learned so much from her. She is so kind and loving and her heart is so big,” her mother says. Anna calls Elle her best friend and can’t imagine life without her in it.

As John Nauman notes, “Elle has taught all of us how lucky we are.”