July 13, 2011
June 11, 2014
Vol 13 No 28
Golf Fore Ellie! Recipes
Meals that Boast Flavor
Around Town
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Business
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School
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Food Truck Frenzy Returns
The Golf Fore! Ellie tournament will be held on Friday, June 20 at the Links of Dardeene to raise funds for the Rett Syndrome Foundation. From left to right, Bryce, Mickie, Ellie and Dave McCool. Photo by Ray Rockwell
The first annual Golf Fore Ellie! four-person scramble and auction will be held on Friday, June 20 at the Links of Dardenne. By Shelly A. Schneider Ellie McCool is 16 years old. Parents of most 16-year-old girls are preoccupied with curfews, developing safe driving habits and how much they had to shell out for prom. Ellie’s parents think about things like seizures, advocating for their daughter’s education, and how to care for her as they get older. Ellie has Rett syndrome. Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. It strikes all racial and ethnic groups, and occurs worldwide in one of every 10,000 to 23,000 female births. Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion. The symptoms appear after an early period of apparently normal or near normal development until 6-18 months of life, when there is a slowing down or stagnation of skills. Mickie McCool, Ellie’s mother, said her
daughter was typical in development for almost the first year of her life. “She said her first words at 7 months old,” Mickie said. “She rolled over on time; she sat up on time, fed herself with both hands, etc.” One day it looked like she was going to catch a cold. “Ellie was sort of glazed over and listless,” Mickie said. “We waited for a cold to manifest and when it didn’t we took her to the doctor. It was a permanent change that happened overnight.” The diagnosis took two and a half years. During that time, Ellie lost communication skills and purposeful use of her hands. She cried inconsolably, and Mickie wondered if Ellie’s condition was a result of something she did. Within just a few months of confirming their daughter’s diagnosis, Dave and Mickie McCool immersed themselves into the International Rett Syndrome Foundation. Mickie has served as the regional representative for Missouri and southern Illinois, and served several terms on the Family Advisory Board, and spoken and presented at the annual IRSF Conference. Just when the McCools have a handle on Ellie’s condition, something new enters the arena. Ellie began experiencing seizures in January 2013. Rett syndrome presents many challeng-
es, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community. Advocating for her daughter is one of See Golf on page 2
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Tiger Docks Adds Director
Zumwalt Schools Win Grant
A Million Ways to Die in the West photos courtesy of Univeral Pictures
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