TALKING ABOUT TURNER SYNDROME

“She’s complicated,” Chet Abbott says. “I’m a good child, though,” Bailey responds.

WRITER: LEIGH NEELY PHOTO: FRED LOPEZ

Bailey Abbott is a vivacious 8-year-old second-grader at The Villages Charter School. She loves the dogs and cats that live on the family farm. She enjoys swinging in her tree swing and recently learned to ride her bike, an accomplishment that’s very difficult for a little girl with Turner syndrome.

This condition affects only girls and women—one in 2,000. Females have two complete X chromosomes, the sex chromosomes. For those with Turner syndrome, there’s an absence of all or part of the second X chromosome in all or some of the body’s cells. Physical features of girls with Turner syndrome include short stature and lack of ovarian development.

“We were lucky the pediatrician at Leesburg Regional Medical Center recognized the symptoms immediately after Bailey was born,” her mom Ashley says. “Her hands and feet were swollen, she was abnormally short, only 17 inches long, and he ordered blood tests to confirm it. Most girls are not diagnosed until they are 9 or older.”

She has only one kidney and had to have surgery for aortic coarctation when she was 3 weeks old. Now, she takes a growth hormone injection every night.

The Abbotts take Bailey to the Turner Syndrome Center at the University of Florida.

One of the only centers in the southeastern United States that provides specialized care for these girls, the center includes pediatric endocrinology, cardiology, nutrition, and psychology, and also has a research center.

Girls with Turner syndrome take about seven times longer to learn things. That’s why it was important to Bailey that she learn to ride her bicycle. She also wanted to learn to ride at a younger age than her older sister, Tenley.

“She about wore me out, but she did it,” says Bailey’s father, Chet.

Ashley adds, “It’s very hard for girls with Turner syndrome to learn to ride a bike because they have difficulty with balance.”

After connecting with the UF clinic, the Abbotts also attended a national conference focusing on Turner syndrome, and came away with more knowledge and lots of new friends who had daughters like theirs. It was a pivotal moment for them. They soon organized their first walk to raise funds for research and recently had the third one. In total, they’ve raised about $75,000. They now want to raise money locally to help families with financial issues attend national conferences to learn more.

Recently, Bailey stood in front of her classmates and explained Turner syndrome to them, which made her parents very proud. Bailey just smiles and says, “I’m tough.”

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