Batesville Mom’s Son Has Rare Genetic Disorder, Inspires Her to Become Nurse

By Julie M. Fidler
A Batesville mother’s life changed drastically eight years ago when her son was born with a rare genetic disorder. Paula and Leasul Long’s son, Landon, was diagnosed at birth with trisomy 4, a duplication of the fourth chromosome, affecting nearly every system in his body.

Landon was her inspiration for earning a nursing degree to help other families dealing with special needs children. The Longs were surprised, scared and confused when Landon was born at White County Medical Center in Searcy.

Right after he was born, Landon was flown to Arkansas Children’s Hospital where doctors in the genetics department saw something they hadn’t seen in 30 years in practice. The Longs were told their son’s disorder was the third documented in the United States, and that documentation came from London, England.

“It’s a rare chromosome disorder,” Long said. “It’s the duplication of the fourth chromosome. The genetics department did all the testing at Children’s while he was still in the Neo-natal Intensive Care Unit. They came back and said he was the third child anyone knew about having this.”

The couple were already parents of 16-year-old daughter, Alexa.

Before entering the registered nursing program at University of Arkansas Community College at Batesville in August 2010, Long worked for a non-profit organization. “I was only working part-time because, the rest of the time, I was taking care of my son,” she said.

Although Landon is physically 8, he has the cognitive ability of a 15- to 18-month-old.

“His cognition is delayed,” Long said. “His mobility is impaired; he is hearing impaired; he is sight impaired; he wears hearing devices called Baha’s (attached behind each ear with titanium studs). He doesn’t walk. He doesn’t sit up. He uses special walkers and his wheelchair to get around.”

None of the above keep Landon from communicating. “We as caregivers know his grunts and his cries,” his mother said. “He is making a few more sounds, but he doesn’t speak. With his hearing, he is making slow progress.”

Long said her son’s prognosis as far as overall health is good. “They think he could live a fairly healthy life,” she said. “He’s susceptible to everything because of his immune system. He’ll always need one-on-one care. He’s never going to be independent.” She said Landon is making progress with mobility and he may eventually walk. He also has dysplasia of both hips.

Landon attends school at West Magnet where he is on the dance team. Sarah Humphrey is Landon’s “one-on-one.” She gets him where he needs to be at school.

“He’s a happy child,” Long said. “He’s very loving. He laughs and smiles a lot.”

Landon is unable to enjoy TV because of his impairments. His mother said he would rather interact with people or hold a little radio he can feel vibrate.

“He loves people,” she said. “He loves rolling and playing. He has chimes and things that make sound. He’s a very pleasant child.”

Long wasn’t a newcomer to the medical field when she signed on for nursing classes. She realized her passion for caring for others as a hospital teen volunteer. She was on the Bethesda Fire Department and earned her EMT (emergency medical technician) license by the time she was 19.

Marriage and her first child caused the nursing career to go on the back burner. Long studied early childhood and ran a day care center when Landon was born. “That’s how we have to think of our lives,” she said. “There’s pre-Landon and post-Landon.”

Landon’s had 20 surgeries at Arkansas Children’s Hospital in Little Rock and many stays didn’t include surgery. “We lived down there pretty much,” said Long. “I have stayed at the Ronald McDonald House.”

“Being with him and being so involved made me realize how strong my passion was,” she said. “Numerous people would say, ‘You’ve missed your calling. Why aren’t you a nurse?’ I felt like the good Lord was telling me something. Finances and everything fell into place, and here I am.”

Long said she has a very close-knit group of caretakers that includes her husband, her daughter and her parents, Alvie and Fay Needham of Batesville. No one else would know what to do with her son, she said.

Long said she looks forward to moving into the new nursing building at UACCB this summer and graduating next December as a registered nurse.

“My ultimate goal is to work at Children’s,” she said. “It may take a little while to get there. I want to help other families like us who are scared or lost and have no idea of what’s going on. I just want to be able to be a comfort to them.”