Amy Navejas isn’t just passionate about this Saturday, which is the annual World Down Syndrome Day.
She’s passionate about every day when it comes to telling the story and stories of those who have been diagnosed with the genetic condition.
“I am totally enamored with my new role at the North Carolina Down Syndrome Alliance and feel like I’ve really found my passion and impact here,” Navejas, 41, says about her job as executive director of the alliance, which is headquartered in Raleigh.
For Navejas, this isn’t just a job.
Being there for fathers and mothers who, early on, are told their child carries the Trisomy 21 chromosome is something she welcomes in helping families navigate through life.
For Navejas, you might say, it’s a calling.
“I’m all about shining a light on Down syndrome, because it makes a diagnosis that’s much less scary for future parents, but also, statistically, exposure benefits youth in schools through increased test scores, decreased bullying, and increased empathy,” she said.
It’s about making a difference in the often-misunderstood world of Down syndrome.
And what anyone who knows the world of Down syndrome will tell you is that Down syndrome is not a disease.
“It is a chromosomal condition,” Navejas said. “They are people who have a third copy of the 21st chromosome. You get an extra chromosome. It is an intellectual and developmental disability. Hitting milestones just takes a bit longer. We commonly see hypotonia or low muscle tone. It can affect their speech. About half of babies have a heart condition.”
Navejas said Jeff Lineberry is the outgoing board chair for the North Carolina Down Syndrome Alliance, and his daughter, Hanna, was born with Down syndrome.
“She had congestive heart failure,” she said. “Because she was in heart failure, she needed to reach 12 pounds before they could do open heart surgery. Her heart was the size of a walnut. After surgery, she is doing wonderfully. Her eighth birthday is on Saturday, which is World Down Syndrome Day.”
Hanna Lineberry is one of more than more than nearly 6,000 babies born annually in the United States with the genetic condition, according to the National Down Syndrome Society. There are about one in 826 Down syndrome births statewide, according to the N.C. Department of Health and Human Services.
Don’t be misled, Navejas said, about people with the condition.
“There is much more they can do than they can’t do,” she said. “They can read, they can work, they can have jobs. The important part for people to know is just how well these individuals can do. There is so much fear, because it is unknown. Parents say now, ‘If I had known, I would not have had any fear.’”
‘A Misunderstood Condition’
Chris Allais and Susie Crossland can tell you all about rearing a child with Down syndrome.
Not one child with Down syndrome, but two children. Allais said he and his wife knew their son Talon would be born with the condition, and knew their daughter would be born with Down syndrome, too.
“It was more confusion and uncertainty,” Allais, 41, said about learning and awaiting the arrival of Talon. “We went home and did a little research. It was quite helpful. But the one thing Susie kept saying is that ‘little children with Down syndrome are so adorable.”
Today, Talon is 3. Sister Lucy is 1.
Chris Allais and his wife will tell anyone and everyone their children with Down syndrome are adorable.
“People refer to Down syndrome parents as the lucky few,” said Allais, a retired U.S. Army staff sergeant. “I would say we are remarkably lucky to have Talon and Lucy.”
Society can be fickle when others are different from what it perceives as normal, and it gives Allais some pause.
“My biggest fear for Talon is mid-teens to adulthood,” he said. “It’s just allowing them their own time. Just allowing them to be who they are. It’s definitely a misunderstood condition. I do not know what it is, but there is something perpetually joyous with them they share with the world. When you have any children, the smiles and laughs are sincere and pure.”
Chris Allais will tell you that he and his wife see their children as blessings, and that their daughter Lucy is their “little princess.”
Allais and his wife look forward to sharing World Down Syndrome Day with other Down syndrome families from 10 a.m.-5 p.m. on Saturday in what Amy Navejas described as “zoo day” at Broadway Zoological Park in Lee County.
“We paint the zoo yellow and blue,” Navejas said. “Our organization colors are yellow and blue, so it’s an opportunity for all our families to come out and enjoy a day at the zoo together and meet other families from across the state. We usually have about 150 people.”
It’s one of the many events throughout the year where the North Carolina Down Syndrome Alliance offers opportunities for Down syndrome families. Other events include attendance at Segra Stadium for Fayetteville Woodpeckers’ minor league baseball games.
Epilogue
“All some families ever hear is ‘I’m sorry,’” Amy Navejas said about parents who come to learn their child has been diagnosed with Down syndrome. “We are the first to say ‘Congratulations.’ We want to support families.”
Navejas has served as executive director for Better Health in Cumberland County (2015-2020). She was executive director for United Way of Cumberland County (2020-2023). But Amy Navejas will tell you that serving as executive director for the North Carolina Down Syndrome Alliance is more than a job.
“It’s so important,” she said. “I love it.”
For Amy Navejas, it’s a calling, and there is little doubt.
Bill Kirby Jr. can be reached at billkirby49@gmail.com or 910-624-1961.
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