Crestview family boosts Turner syndrome awareness

Madison Baxley, pictured during Halloween last year, and her family will have their annual Turner Syndrome Awareness Family Fun Day the weekend of Oct. 6 in Fort Walton Beach. [Special to the News Bulletin]

CRESTVIEW — Turner Syndrome Family Fun Day is 11 a.m. to 3 p.m. Oct. 7 at the Fort Walton Beach Fairgrounds, 1958 Lewis Turner Blvd.

Multiple bouncy houses for different age groups, laser tag, rock painting, vendor booths and fire truck tours are some of the day's activities.

Admission is free for children ages 2 and under, and $5 each for older children. Barbecue lunch plates will be served for $5 each as well. Other foods for sale include Boston butts, snow cones, cotton candy and popcorn.

Previous fun days took place at the Old Spanish Trail Park pavilion in Crestview.

"We kind of outgrew that location," one of the event's organizers, Ashley Baxley of Crestview, said.

Ashley and her husband Matthew began the fun day a few years ago to support one of their children, Madison, who has Turner syndrome, a genetic chromosome disorder that affects females.

Doctors diagnosed Madison before birth as having the syndrome and "multiple heart defects at 20 weeks gestation," her dad stated in an email. She had her first heart surgery to repair a coarctation — or narrowing — of the aorta later that week. The aorta is a large blood vessel that delivers oxygen-rich blood from the heart to the rest of the body, according to the Mayo Clinic's website. Matthew Baxley said the condition is frequent in people with TS.

After six years of multiple appointments the valve that she had fixed as a baby began to narrow again. In February of 2015 Madison had an angioplasty to open her aorta back to an acceptable limit.

"Madison still has multiple doctors and will more than likely have to have another heart surgery in the future but for now she is a happy spunky 8-year-old," Matthew Baxley stated. "After tackling all of the unknowns that my wife and I went through, we knew we needed to do something to help spread awareness for Turner Syndrome. Four years ago we started the Turner Syndrome family fun day with the goal of spreading awareness."

TS is a genetic condition that causes such characteristics as "short stature, ovarian failure, heart defects, and normal intelligence with possible learning disorders, kidney abnormalities, lymphedema, frequent ear infections, hearing loss and visual and spatial difficulties," according to an event media release.

Ashley said while some of the proceeds go toward Madison's medical costs, awareness of TS Syndrome has become their focus.

"It's becoming very crucial to her and our family to raise awareness as these events are becoming more and more important to her. She loves meeting people with TS," she said.

Because the event is indoors, it will be held, rain or shine.

In addition, support for those with TS extends beyond Saturday's activities.

"We have a support group in our area called the Northwest Florida Panhandle Butterflies, and there's about 10-12 ladies with TS in our group right now," Ashley Baxley said. 

"Each event we have, we meet more and more girls and women with TS."

This article originally appeared on Crestview News Bulletin: Crestview family boosts Turner syndrome awareness