Published on Monday, September 11, 2017
Media Contact: Annie Oeth
Dixie Bergeron knew something was wrong with her son, Jacoby.
The 6-year-old’s development seemed to lag in comparison to other children his age, she said, but her concerns were dismissed by doctors. That is, until she met Dr. Mark Lee, then a pediatric neurology resident at the University of Mississippi Medical Center.
“He was the first one who listened to me,” she said. “We love Dr. Lee. We wouldn’t take anything for him.”
Jacoby first traveled with his mother to Jackson for Lee’s care, and then to the Gulf Coast, when his practice moved there. Now care for Jacoby is just 30 minutes from the Bergerons’ Petal home.
Lee now keeps office hours in Hattiesburg one day a week at the new Children’s of Mississippi Hattiesburg clinic, bringing specialty care closer to patients and their families. Children’s of Mississippi is the umbrella organization that includes Batson Children’s Hospital as well as UMMC pediatric care and specialty clinics around the state. Included in the pediatric specialties available at the Hattiesburg location are cardiology, neurology, gastroenterology, endocrinology, pulmonology and wellness.
“We’ve gotten 25 calls today, and it’s just 3:30,” said nurse Jamie Cook, who travels with Lee from the Children’s of Mississippi Gulf Coast specialty clinic in Biloxi each week to the newly opened clinic at 2109 Hardy St.
Lee’s appointments number about 15 each Monday in Hattiesburg, and those patients are not all from the Hub City. “We see patients from around the region,” he said, “Natchez, Waynesboro, Laurel.”
For the Bergerons, Lee became a trusted ally, treating Jacoby’s symptoms as they occurred while trying to untangle the mystery of his illness. A UMMC study of his genetic makeup found the culprit: a rare and fatal nervous system disorder called Batten disease.
Over time, Jacoby has regressed in his abilities, becoming nonverbal and relying on a wheelchair much of the time. His grand mal seizures are controlled by medications, and his eyesight, something many children with Batten disease lose, is perfect so far, Dixie Bergeron said. He enjoys school, attending special education classes at Petal High.
“He is the rarest of the rare,” she said of her son’s disorder, “but he’s been blessed with good doctors every step of the way.”
According to the National Human Genome Research Institute, Juvenile Batten disease is one of 6,800 rare diseases affecting 30 million or almost one out of every 10 Americans. It occurs about two to four times in every 100,000 live births.
On this clinic visit, Bergeron is dressed for battle with her child’s disorder, wearing a “Fight Like Jacoby” T-shirt with a teal ribbon, signifying Batten disease awareness, and a blue rubber bracelet printed with “Jacoby’s Journey” and “Battling Batten.”
“There is no ‘no’ when it comes to him,” she said, noting efforts to get items needed for daily life, such as a bathtub lift. “He is going to have what he needs.”
Having care closer has made what Jacoby needed – a medical home for a variety of pediatric specialties – within easy reach.
“It is a relief not to worry about how I’m going to get the gas money to be where we need to be,” said Bergeron, “and traveling long distances with a special needs child who could have a seizure is a risk.”
The Hattiesburg clinic is part of a network of specialty care provided by Children’s of Mississippi. The Biloxi clinic was opened in January, following the opening of a Tupelo location in 2015. There are now more than 10 Children’s of Mississippi clinics in the state, including clinics on and adjacent to UMMC’s Jackson campus, in the Jackson metro area and in Grenada.
Specialized care also needs to be in the reach of local pediatricians whose patients need specialty care such as neurology or cardiology, said Dr. John Purvis, associate professor of pediatric orthopaedic surgery and lead physician in the UMMC Office of Physician Relations. “We all share the same goals: healthy children and healthy families.”
Having specialists close to home is a help to local doctors, said Dr. Jonathan Shook, a pediatrician with The Pediatric Clinic in Hattiesburg.
“Pediatricians in Hattiesburg and surrounding communities are grateful that many of our patients will be able to see their subspecialty pediatricians from Children's of Mississippi at their outreach clinic,” Shook said. “This service will save many families the time and expense required by traveling to Jackson, and it will also provide needed access to subspecialty care that might not otherwise be possible for some children. This clinic will be a great benefit for children and families in Southeast Mississippi.”
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