CEDAR CITY – Parents of children with Turner Syndrome finally have a support group to turn to here in Cedar City to discuss the unique needs and experiences of raising a child with just such a condition.

Shanalee Sadler, mother of Ella Michelle Sadler, a local three and a half year old with Turner Syndrome, has founded Southern Utah Turner Syndrome Support as a way of reaching out to other parents in the area in the hopes of both spreading awareness about the condition and learning new ways to help her daughter cope with the limitations that come along with living with Turners.

Sadler said she found out that her daughter was going to be born with Turner Syndrome when she was only five months pregnant after an amniocentesis was performed, because her doctor noticed a fluid buildup on the back of her neck (cystic hygroma) and recognized that as a red flag for either Down or Turner Syndrome during a routine ultrasound.

“It was difficult at first, learning something was wrong with our first little baby. It’s something you never want to hear,” Sadler said. “But I quickly did my internet research and asked lots of questions of the Pediatrician and soon learned that these girls typically lead normal, full lives.”

“Through all of this we have learned that the most important thing with Turners is vigilance, keeping up on the latest information and treatments for the myriad of symptoms,” she added.

According to Turnersyndrome.com, Turner syndrome is a rare disease that only affects females. It stems from an abnormality in one of a girl’s X chromosomes, leaving her with only one fully functional X chromosome.

“As a result, girls with Turner syndrome (also known as Ullrich-Turner syndrome) tend to be sexually underdeveloped and infertile. Other common symptoms of Turner syndrome include a short stature and a webbed neck. About one in 2,500 girls has Turner syndrome,” the Web site reported.

Sadler said that her daughter, Ella, is small for her age and she has some mild defects in her heart and kidneys and a handful of minor physical abnormalities, including a short, thick neck with mild webbing at the shoulders, short limbs with a long torso ... these are all typical of girls with Turners.

“(When they meet her) most people think she is a lot younger than she really is, so they are amazed at how smart she is and how well she can talk,” Sadler said. “Overall, she is an adorable, vibrant, intelligent little girl. Luckily her health has not been affected.”

Sadler said anyone who wants to come to a meeting should bring their daughters so the girls can get to know each other and socialize.

“I plan on highlighting an article or report on Turners each month, and then just allowing for Q & A and story swapping. As parents, we can benefit from each other’s experiences. We also plan on having activities like BBQs and picnics to help get to know each other,” Sadler said.

The group will meet the second Saturday of every month at 2 p.m. at Shanalee’s house until there is a larger group that requires a more formal meeting place.

For questions call Shanalee at (435) 668-0082 or visit their Facebook site at http://www.facebook.com/home.php?#/group.php?gid=143241401687.