TIFTON — Lottyn Bates, 9, just returned from throwing the opening pitch at a softball game fundraiser held this week at Tallahassee Community College. The event is sponsored annually by Florida firefighters who set up Florida Democrats to play against Florida Republicans.

The firefighters plan to donate the money raised from the event to the Muscular Dystrophy Association and to the family of a representative who died recently. Bates and his family are well aware of the funding MDA needs to continue research. He was diagnosed last year with a rare form of MD and appeared on a segment of Jerry Lewis’ annual telethon for MD last fall.

Lottyn’s mother, Maegen, who has always been an advocate for Lottyn, said this week that she was just contacted last week by a family in New York whose child, who just turned 4, had been diagnosed as having GAN, the same disease as Lottyn.

“We think she is the youngest to be diagnosed,” Maegen said.

The New York family has started a non-profit organization to raise awareness of the disease and raise funds for much-needed research.

“We have located doctors that researched GAN in the past, but they ran out of funding,” Maegen said. “Hopefully, they’ll be able to pick back up on the research.”

Maegen said Lottyn’s neurologist said no more than 50 people have been diagnosed with the disease. The Bates know of a 17-year-old New Zealand boy; two grown men in Florida; a boy in Alabama; a girl in Florida; and a case in California.

“I think with this organization the families are forming and getting a meeting of top scientists and doctors who are willing to continue the research; we’ll have a big table somewhere to hash it out,” Maegen said. “We are trying to get people together on a national level who truly care and know your situation.”

When Lottyn was 2 1/2 years old, his parents noticed he was falling frequently and he wasn’t meeting growth milestones like other children. Doctors just told them he was clumsy. His family took him to nine different specialists, one of whom told them Lottyn was flat-footed and suggested putting him in shoes to correct the problem. One doctor told them that Lottyn’s balance was off because of fluid in his ears. Another suggested sleep apnea was the cause of Lottyn’s problems. Another removed the boy’s tonsils and adenoids, but that didn’t help.

Magaen said some doctors made her feel overly cautious or protective over her firstborn, but she continued to believe something was wrong and she didn’t give up finding out what it was.

The Bates family, including husband George and two other children, Parker and Lilly Grace, lived in Albany as Lottyn started pre-kindergarten. His report card, with unsatisfactory marks beside “agility,” “coordination,” and “balance,” was more confirmation there was a problem. As Lottyn started first grade in the Tift County public school system, 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’s parents took him to a neurologist in Atlanta in 2005 and it was there that a doctor said he had a clear-cut case of Riedich’s Ataxia and ran a DNA test for that disease, which turned out negative. Then, several more DNA tests for several MD and other neurological disorders also came back negative. The series of tests cost the family $10,000.

Magaen said she logged on to the computer and kept reviewing articles. She noticed that a particular doctor’s name at Johns Hopkins in Baltimore kept popping up. She e-mailed the doctor and sent him a picture of Lottyn and within five minutes, the doctor called her. Lottyn and the entire family traveled to Baltimore where tests confirmed that Lottyn had GAN, a rare form of MD that damages the peripheral nervous system, which controls the arms, legs and other parts of the body. Most who have the disease have problems walking and later they might lose sensation, coordination, strength and reflexes in their limbs. GAN also causes hearing and vision problems in some. Lottyn has been one of the fast progressors.

Lottyn, who has curly blonde hair, light brown eyes and a big smile, has plenty of hugs for those he meets. His mother, Magaen, said circumstances since last fall have changed somewhat for Lottyn and his family.

“Everything is fine overall, but we are having some trouble with him eating certain foods,” Magaen said this week. “Some foods make him choke.”

An ear, nose and throat specialist in Atlanta tested Lottyn recently and the results were that the disease had caused weakened vocal cords and he also has the beginning stages of paralysis.

“His vocal cords will open some and then not close,” Magaen said. “That causes him to choke.”

Lottyn’s parents removed him from public school in January — partly, his mother said, because he tired so easily and partly because the implementation of the technology Lottyn needs to function “wasn’t as good as it could have been” in the classroom.

“I could have put the energy into that and followed through with it myself or I could have just schooled him myself,” Magaen said. “I decided to home-school him.”

Maegen said, “It’s difficult for teachers who have regular students, special education students and gifted students in the same class with the requirement of No Child Left Behind.”

“It’s difficult to give all of the children what they need,” Maegen said. “I wanted to give Lottyn every opportunity to do what he wanted to do while he is able to do it.”

Maegen said she and Lottyn visit the library where she allows him to pick out the books that interest him.

“We go at a pace that doesn’t overwhelm him,” she said. “He is much more comfortable and relaxed.”

GAN is an isolating disease, Magaen said, and it’s nice to have people who know the different levels of the disease’s progression and to have somebody who knows what parents of GAN children go through.

“Because it is so rare, people don’t know or understand GAN enough to know how to feel about it,” Maegen said. “It’s not like, ‘Oh, they’ve got cancer,’ and everyone knows,” Maegen said.

Maegen said more information about the disease, the fundraising efforts to find a cure and information about the support organization that is forming can be found online at www.hannahshope.org. Anyone interested in keeping updated about Lottyn can visit the Web site at www.caringbridge.org and enter “lottynbates” to get to the page where information about him is posted.



To contact senior reporter Angie Thompson, call 382-4321.