CRESTVIEW — Madi Baxley is like many other 5-year-olds. She likes playing with her sisters, climbing on her daddy’s fire truck, and trying to stay upright while roller skating.
But she also has Turner Syndrome — a genetic chromosome disorder that affects one out of 2,500 women — and its accompanying medical conditions.
“She has the classic short stature that goes along with each person with TS,” her mom, Ashley Baxley, said. “She has kidney problems, several heart conditions, she has thyroid disease, and swelling of her hands and feet.”
As a result, Madi sees six medical specialists throughout the year, Baxley said. To accommodate her health concerns, Madi is homeschooled, accompanied by her older sister, Ally, 8.
“That way we can go at the pace she wants to go,” Baxley said.
To help pay for Madi’s medical expenses and raise awareness of Turner syndrome, the Baxley family and the Northwest Florida Panhandle Butterflies, a TS support group, are hosting their second annual Turner Syndrome Family Fun Day Oct. 3.
There will be bounce houses, including one with an obstacle course for older kids, a rock climbing wall, barbecue, cotton candy, snow cones and vendors including Scentsy candles, Thirty-One merchandise, Jamberry nail wraps and Pampered Chef, Baxley said.
The Butterflies, Madi and her family, including dad Matt Baxley, a Fort Walton Beach firefighter, Ally and Lilly, 2, will be on hand to share information about TS.
TURNER SYNDROME FACTS
●Turner syndrome is a genetic condition, present from birth, in which the second X chromosome is completely or partially deleted.
●1 out of 2,500 women have Turner syndrome
●Turner syndrome itself is not life-threatening but the medical conditions that ensue because of the disorder can be, and they require strict medical management throughout the patient’s entire life.
●Symptoms are short stature, ovarian failure, heart defects, kidney abnormalities, lymphedema (swelling of arms and legs), frequent ear infections and hearing loss, visual and spatial difficulties, and possible learning disorders.
Source: Northwest Florida Panhandle Butterflies
WANT TO GO?
WHAT: 2nd Annual Turner Syndrome Family Fun Day
WHEN: 11 a.m. to 3 p.m. Oct. 3
WHERE: Old Spanish Trail Park, Industrial Drive and Stillwell Boulevard, Crestview
COST: $5 per wrist band; $5 per barbecue plate; family of four package: $25 (includes two adults, two children, and four barbecue plates including sides and chips, and two wrist bands)
NOTES: Sponsored by the family of Madi Baxley and the Northwest Florida Panhandle Butterflies to raise awareness of Turner Syndrome and funding for Madi’s medical treatments. Information: 398-2073.
This article originally appeared on Crestview News Bulletin: Crestview family fun day raises Turner syndrome awareness next week