2016 Speak Now For Kids Family Advocacy Day Hero: Kailyn

When she was just 14-months-old, Kailyn was diagnosed with intractable epilepsy. Many doctors were convinced that the treatment for Kailyn’s condition was to merely adjust her medications, the varieties as well as the amounts. As time went on, Kailyn was placed on more and more medications; at one point in time she was taking 19 pills per day. Kailyn’s seizures began lasting longer durations and occurring more frequently than ever before, indicating that this treatment approach was not working.

With a tremendous amount of hope, Kailyn’s family decided to take her to see the medical team at UH Rainbow Babies and Children’s Hospital. Kailyn’s doctors recommended brain surgery for Kailyn’s condition. Although Kailyn’s first two brain surgeries reduced her seizures immediately following surgery, Kailyn’s seizures returned. As a result, her doctors performed a more extensive brain resection for Kailyn’s third operation, removing her right occipital lobe.

Amazingly, Kailyn has been seizure-free since this last operation, almost four years now. A side-effect of her most recent brain surgery is some visual impairment. But, Kailyn always wears a smile on her face and will not let her difficulty seeing ever stop her.