He barely survived a premature birth. At 4 he’s strong but needs special shoes, chair

This article first appeared in the Miami Herald in collaboration with the Lee Caplin School of Journalism and Media.

It was 11 p.m. on a Saturday in September and Jessica Rivera had just put the kids to bed, when her 4-year-old son, Jayce Locklear, suddenly screamed. She picked him up, loaded him in the car and sped to the emergency room at the Broward Health Medical Center.

The doctors checked out Jayce and couldn’t find anything physically wrong. The same thing happened four more times until finally, she demanded that he be admitted. After a week of tests, doctors discovered bacteria in his gut and came up with a straightforward solution: give him a special milk to drink.

“When you have kids that have special needs and they can’t speak for themselves,” Rivera said, “you have to be very assertive and you have to kind of be demanding.”

Jayce was diagnosed in 2020 with spastic diplegia cerebral palsy, a neurological condition that causes muscle stiffness which can affect the legs, face, and arms. This condition makes actions like walking and talking difficult. Despite difficulty, Jayce’s determination and constant work with specialists changed him from the boy his preschool teachers hoped would walk to one who runs around.

Jayce Locklear with his family. Family photo

He attends the preschool at Arc Broward, a nonprofit organization offering educational instruction as well as physical, occupational and language therapy for individuals with disabilities. He is nonverbal and has difficulty navigating his environment independently, according to the agency, which nominated Jayce for help from the Miami Herald/el Nuevo Herald Wish Book.

“The therapy team got together and decided who we thought would benefit from Wish Book,” said Janeese Doné, the social services specialist who works with the preschool team. “Jayce has been making very good progress recently and we thought he would benefit a lot.”

Rivera and Brandon Locklear, Jayce’s father, grew up in Fort Lauderdale. Rivera works at 4Ever Young, a health and wellness company, while Brandon has a job in a Publix warehouse.

In 2012 the couple celebrated the arrival of their first child, Skyler. It was a complication-free delivery, and gave Rivera no hint of the challenges she would face eight years later, when she again became pregnant.

On June 23, 2020, her water broke after only 24 weeks. She was 33 and thought she had lost her baby. Jayce was born weighing only 1 pound, 8 ounces. He was immediately transferred to the neonatal intensive care unit (NICU) at Broward Health Medical Center where he spent 113 days. During his first week and a half, he experienced seizures.

At just three months of age, Jayce needed brain surgery for a bilateral brain bleed. But doctors said it couldn’t be performed until he reached four pounds. All Rivera could do was wait. She spent days in the hospital, only returning home occasionally to shower and eat. That was a big adjustment not only for her, but also for big sister Skyler, who stayed with her grandparents and rarely saw her mom.

Jayce’s time at the NICU was difficult. After the surgery it was touch and go. He started to show improvement only during the last 30 days of his stay. When he was able to disconnect from the oxygen tank, Rivera began imagining the possibility of him coming home.

Jayce during his 113-day stay at the NICU. Family photo

Then came Jayce’s cerebral palsy diagnosis. Rivera knew life had forever changed and she had to become Jayce’s greatest advocate.

“Any time he’s had a medical emergency, we’re very vigilant,” she said. “We don’t let them tell us it’s nothing. From that lesson till now, with his last medical emergency, we’ve learned to stay vigilant.”

Ever since the recent emergency room visits in September, Jayce has been unable to digest any solid foods. He requires two cases per week of special milk that costs $200. Medicaid would have paid, Rivera says, but they lost coverage this past March due to paperwork problems that are being addressed. The boy also requires Baclofen oral solution, a medicine for muscle spasms that costs $800 per month.

Rivera says she relies heavily on her support system. Her mother Cheryl helped her daughter through online research about her grandson’s special needs. She also connected with social workers for resources.

The in-laws are also a big support. They often offer to watch Jayce.

“They give me breaks when I need them even though I’m hard pressed to take them,” Rivera says while sitting in a classroom at Arc Broward. Nearby Jayce claps along to the “Rainbow Colors Song” during circle time.

Jayce, who has cerebral palsy, “is very determined and he is very strong-willed,” says his mother, Jessica Rivera. Family photo

Jayce is spirited, smiley, and enjoys late-night car rides listening to music.

“He really likes Prince,” says Rivera, explaining that she discovered this while driving with her son. When “Little Red Corvette” came on, Jayce bopped his head to the beat. Then he protested when the song stopped.

From Wish Book, Rivera says, Jayce’s family would like “Billy shoes,” footwear made with a zipper for special needs kids. They will allow him to continue using an ankle-and-foot stabilizing brace during his physical therapy and day-to-day walking.

He also needs an adaptive stroller, similar to a wheelchair but more comfortable, for kindergarten, which he starts next year. And he could use an activity chair, which will allow him to eat dinner with his family. Finally, he’d benefit from cause-and-effect toys, learning tools for fine motor skills, problem-solving, and more.

Rivera has faith that one day Jayce will be able to advocate for himself. “He is very determined and he is very strong-willed,” she says, then adds, “He is very fearless and that part worries me a little bit.”

Heidi is a junior at Florida International University majoring in Digital Communication and Media. She is interested in culture and aims to tell stories that speak to the human connection and experience. In the future, she hopes to work in the entertainment field, storytelling through visual art and music. 

Chloe Barnett is a junior majoring in Digital Broadcasting and Anthropology. After she graduates, she hopes to pursue a career as a documentary filmmaker and anthropologist.