Illeona’s Visit to Orlando

“A welcome break from her regular life indoors”

Illeonna was just four years old when she had her first seizure. The tiny tot spent a week in the hospital following the episode that would change the course of her life. Results from an MRI and EEG showed that Illeona had abnormal cerebral activity in the lobes of her brain. Doctors diagnosed her with epilepsy, a disorder in which nerve cell activity in the brain is disturbed, causing recurrent and unprovoked seizures. Her condition worsened to the point to whereby the time she was in her eighth year, she suffered from a staggering 500 seizures in one year, or more than one a day.

IMG_1751Illeona’s physicians felt that surgery to remove tissue in those lobes would reduce the number of seizures but unfortunately, the surgery proved unsuccessful as she still suffered from debilitating seizures. The next course of treatment for Illeona was vagus nerve stimulation therapy in which doctors implanted a device in her chest to send bursts of electrical energy to Illeona’s brain to reduce seizure activity. Fortunately, this therapy brought better results and now with medication, she is better able to manage her lifelong illness.

With the threat of seizures always on her mind, it wasn’t surprising that Illeona felt different from other children. That, combined with hospitalizations that took her out of school, contributed to Illeona falling two years behind and switching to a different school that better suited her needs. With all of the medical problems and disruptions to her life, epilepsy has taken a significant emotional toll on Illeona. Now 12 years old, she spends most of her day alone, painting or retreating into a world of books, or curled up on her sofa with a bag of popcorn and a good Disney movie.

IMG_1760The opportunity to take a break from her indoor world was greatly appreciated and made Illeona feel very special. She loved the opportunity to visit Universal Studios and the Island of Adventure in Orlando. She particularly enjoyed “getting soaked” at the Dudley Do-Right Ripsaw Fall and Popeye & Bluto’s Bilge-Rat Barges. And, she enjoyed the sensation of soaring in the sky at the Wizarding World of Harry Potter.

The Double Tree by Hilton showered her with gifts, and she took lots of selfies at Madam Taussauds. Although the food was great at both Chevy’s Fresh Mex, Benihana’s and Emeril’s, what she most remembers about eating out were the desserts. Rounding out her Orlando family adventures were a visit from Cinderella from Once Upon a Party and attending a performance of Blue Man Group.