CHAPEL HILL, N.C. — Her pediatrician noticed something was off when Jurnee Locklear came in for a checkup at 3 years old, her mother said.

The toddler was born with Down syndrome, a genetic condition caused by having an extra copy of chromosome 21.

The condition affects a person’s physical and intellectual development and can increase the risk of heart defects, hearing loss and other medical issues. It requires annual screenings and blood tests to check for abnormalities, Jurnee’s mother Myranda Locklear said.

Last year, Jurnee started experiencing new symptoms just as she enrolled in Robeson County’s Shining Stars preschool program for children with disabilities.

Her parents took her to one doctor and then others, who said the toddler might have a viral infection. They ended up at UNC Hospitals in Chapel Hill, where Jurnee was diagnosed in September with acute lymphoblastic leukemia, a cancer that affects white blood cells and puts her at high risk for other infections.

Locklear, 42, and her husband Baker Locklear, a 48-year-old U.S. Postal Service supervisor, spent the next three months at UNC as Jurnee started her treatment plan. They still have two years to go, but the experience so far “has been awesome,” Locklear said.

She credits pediatrician Kate Westmoreland with tirelessly guiding them and advocating for Jurnee to get Shining Star services at their home. She also helped them enroll in the CAP/C Medicaid-based services program for medically fragile children, Locklear said recently at the grand opening celebration of the new Down Syndrome Clinic at UNC Hospitals.

The clinic, located on the ground floor of the N.C. Children’s Hospital on Manning Drive in Chapel Hill, officially opened last Friday — on World Down Syndrome Day. It will be a one-stop location for children and adults living with Down syndrome.

Easier access to treatment, information

The exact number of children born with Down syndrome in North Carolina is unknown, but the state’s Department of Health and Human Services reports that roughly 1 in 826 babies are born with the genetic condition.

The UNC Down Syndrome Clinic is the first of its kind in North Carolina and one of only a handful of similar clinics across the country. One day, it could be part of a freestanding children’s hospital operated by UNC Health and Duke Health, officials said.

Westmoreland, the founder and medical director of the new Down syndrome clinic, has a 2-year-old daughter, Izabel, with Down syndrome.

“She is the absolute best thing that has ever happened to me,” Westmoreland said. “She has brought so much joy and love and laughter into our lives.”

But the first year was the hardest, with her daughter undergoing open heart surgery, she said. Even as a pediatrician, she struggled to navigate the medical system, and she imagined what it must be like for families who didn’t have resources.

That sparked the idea for a comprehensive clinic for children and adults offering a tailored medical, developmental and therapeutic approach, she said.

Each patient will have a team of experts, including pediatricians, therapists, audiologists, and a registered dietitian. Services will include medical, vision and hearing screenings; therapy and developmental assessments; clinical trials; nutrition counseling; and family support, as well as training for primary care providers.

The North Carolina Down Syndrome Alliance played a critical role in opening the clinic, Westmoreland noted, including the donation of a $100,000 grant to establish the NCDSA Down Syndrome Fund at the UNC Health Foundation.

The alliance also brought together caregiver focus groups last year to better understand the challenges facing families of children with Down syndrome and raised money to hire a nursing coordinator who will assist staff and families.

“That’s a hard position to fund because normally it’s not a billable position, so you have to raise money from donations and grants to get it started,” Westmoreland said, adding that the money was raised “in a matter of weeks.”

Now there’s one place for treatment, help with services and information about the latest research and trials, she said, and parents won’t “have to take as many days off from work.”

They can also “have one person there advocating for their child who knows everything about Down syndrome and can make sure that they’re getting the best care possible,” she said.

That is especially important right now, because many families are scared about what’s happening at the federal level and how that might affect Medicaid waivers and specialized education plans, she said.

While Myranda Locklear can juggle the two-hour trip to Chapel Hill for Jurnee’s appointments, and Baker can often get time off work to join them, the stay-at-home mom of four said she’s happy that other families and children will get extra help.

Raising a child with Down syndrome is challenging, but she’s also learned a lot, Locklear said, as her husband bounced the smiling little girl nearby on his lap.

“In my experience with my daughter, and with other Down syndrome children, what I have seen is they are very loving,” she said. “They love attention … because they love people, and they are determined, but they can be stubborn at the same time.”

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