By Angie Thompson
TIFTON, Ga. — Lottyn Bates, 8, was as big of a hit at the Muscular Dystrophy Association’s telethon over the Labor Day Weekend as he is in his third-grade class at Northside Primary School and with his family and his friends.
Lottyn, who was recently diagnosed with a rare form of muscular dystrophy, was asked to appear on television for one segment of Jerry Lewis’ annual telethon for Muscular Dystrophy but was so popular with viewers, the Tallahassee television station asked him to hang around for the entire telethon.
“The MDA director from Tallahassee told them he was born to be on TV,” said Lottyn’s mother, Magaen Bates.
Lottyn is a handsome boy with curly blonde hair, light brown eyes and a big smile and plenty of hugs for everyone he meets. Lying by his mother on the family’s couch, Lottyn closed his eyes to rest for a few minutes. Lottyn loves school and looks forward to going every day, his mother said, but some days tire him more than others. After a short rest, he stood and asked a reporter to take a ride with him on his golf cart, which was a gift from his grandmother so he “could go fast.”
After attempting to put the key in the golf cart’s ignition, Lottyn turned to his willing passenger for assistance.
“Can you put the key in for me?” he asked. He then turned the key and eased along, giving two women the tour of his family’s property.
Lottyn was born with dark, curly hair. When his mother questioned the pediatrician about it, she said he replied that Lottyn was a beautiful baby boy with curly hair and that there was nothing to worry about.
“I began to notice as he grew that he wasn’t reaching the milestones as quick as I thought he should,” Magaen said. “At 2 1/2, he was falling down a lot, but the doctors said he was just clumsy.”
After another year, Magaen said Lottyn began falling more and more.
“We went to nine different specialists,” Magaen. “One of them said he was flat-footed and suggested we put inserts in his shoes when he became an adolescent to correct the problem.”
Magaen said one doctor told her Lottyn’s balance was off because of fluid in his ears. Another suggested it was sleep apnea. Doctors removed Lottyn’s tonsils and adenoids, but that didn’t help. Magaen said some doctors made her feel as if she was being overly cautious or protective because Lottyn was her first child, but she believed something was wrong and continued to try to find her son the help he needed.
The Bates family, including husband George and two other children, Parker, now 5, and Lilly Grace, now 4, were living in Albany when Lottyn started pre-kindergarten.
“That was the first time other than family that we got some confirmation there was a problem,” Magaen said. “He got his report card and got unsatisfactory marks beside agility, coordination and balance.”
George was commuting to Tifton to work. When his father died, the family relocated to Tifton to make a fresh start and Magaen looked for a Tifton pediatrician to care for her three children. Lottyn was 6 by then and was starting first grade in the Tift County Public School System.
Magaen said that Lynn Parson, a nurse practitioner at Affinity Health Group, took one look at Lottyn, performed a few simple tests and asked if Lottyn had been referred to a neurologist. Lottyn was referred to a neurologist in Atlanta in 2005. A doctor there said Lottyn had a clear-cut case of Riedich’s Ataxia and ran a DNA test for that disease, which came back negative. Lottyn had several more DNA tests for various forms of muscular dystrophy and other neurological disorders that cost $10,000 each, according to Magaen, and they all came back negative.
“I came across GAN on the computer and kept looking at articles about it,” Magaen said. “I kept seeing a particular doctor’s name on articles and emailed him at Johns Hopkins in Baltimore with all the symptoms and a picture of Lottyn and within five minutes, I got a call from him.”
In the fall of last year, just as Lottyn was entering the second grade, the doctor at Johns Hopkins asked Magaen if there was any way possible to get Lottyn to Baltimore for an exam. The entire family, including Magaen’s mother, made the car trip to Baltimore.
“The doctor at Johns Hopkins said he would be willing to tell me without DNA testing that he had GAN,” Magaen said.
Lottyn’s DNA test for GAN was performed by a doctor at the University of Utah, the only one in the United States which performs the test.
“They just mapped out the gene for GAN last year,” Magaen said.
The GAN DNA test was performed in September and one week before Christmas, the family got word that it was positive.
“There doctor said there were only 50 cases he knew of and only about 13 kids still living with it,” Magaen said. “Even though the prognosis isn’t what we would like it to be, knowing is better than not knowing.”
The signs of GAN begin with damage to the peripheral nervous system, which controls the arms, legs and many other areas of the body. Most people have problems with walking and later, they might lose sensation, coordination, strength and reflexes in their limbs. Hearing or vision problems might also occur. The “kinky hair” is characteristic of GAN and appears in almost all of the people affected by the disease.
“Lottyn has been one of the fast progressors,” Magaen said. “It is in his feet and hands now. Eventually it will work its way to his other body systems.”
As the disorder progresses, the brain and spinal cord (central nervous system) become involved. This may cause a gradual decline in mental function, loss of control of body movement and seizures.
Lottyn wears leg braces to school, but Magaen said his teacher, Tina Collier, said that he is one of the first students in the class to ask to help her or other students.
“She (Collier) said he is empathetic to other children and wants to help them,” Magaen said. “Children who have health problems can be such an inspiration to people who just think they have problems.
“Every since he was little, people have said how sweet and different he is. He is really an extraordinary child.”
Magaen is an advocate for Lottyn, often doing independent research to discover any assistance that might be available for him. She said that Lottyn’s cognitive and mental functions are fine, “it’s his body that’s holding him back.”
“The child’s dream is to go to school every day,” she said. “He doesn’t want his work load cut in half.”
Through her research on the Internet, Magaen discovered the Georgia Project for Assistive Technology. She met last week with representatives of the group and her hope is that the local school system will join the effort to get Lottyn the computer and software that he needs to keep up with his class. Sometimes, Magaen said, people think lowering what is required of Lottyn is the answer. Math is Lottyn’s favorite subject, but Magaen said he liked all of his class work. She’s concerned though that, with the decline in his fine motor skills, just holding a pencil will become too difficult. The technology, if provided, will allow him to continue to “blossom.”
“He doesn’t want his work cut in half,” Magaen said. “Here in Tift County, most of the special ed children have learning problems. They don’t have many children with special needs that are as bright as Lottyn is. Whether or not his handwriting is good is not important. We just want him to be as independent as he can be as long as he can be so he will have some self-esteem as he gets older.”
Magaen said she and other family members rely on faith to see them through the difficult times.
“I don’t see how people can do it without faith,” she said. “You take it one day at a time and every day is a gift. You had better say the things you want to say and be the way you want to be now while you have the time.”
Angie Thompson writes for The Tifton (Ga.) Gazette.
