Miracle Miles For Kyle
The annual running and walking 5k drew more than 250 participants to celebrate Kyle Butt's recovery from pediatric epilepsy.
Seven-year-old Kyle rested in his mom's arms, his head on her shoulder.
The Stanley School first grader popped his head up for quick answers to questions about what he likes.
Kyle Butt, who has been seizure-free for five years, looked shy around the crowd assembled at Preston Beach Sunday for the 5k race that is named after him: The Miles For Kyle 5K Run.
His mom, KC Butt, said he is learning to become more relaxed with the crowds and attention on his Miles For Kyle day.
Ultimately, though, the day is about celebrating his life and letting others know that help is available for their children.
The help for the Butt family came after suffering and anguish.
His parents, KC and Mark, anguished over the decision to have a doctor remove 42 percent of Kyle's brain to overcome severe epilepsy.
But the decision to them was life or death.
Electrical storms in Kyles brain were continuing in spite of medications and a special diet. The storms were causing cognitive and developmental delays.
KC is convinced Kyle would not be alive today were it not for the surgery planned by Dr. Deepak Lachhwani and performed Dr. William Bingaman of the Cleveland Clinic.
Tests showed the presence of a lesion on the right side of his brain.
Before the May 2007 surgery the boy couldn't say mumma.
After surgery, and awakening from a medically induced coma, his mom heard him say the word clearly for the first time.
What he lost by having three of the four lobes removed from the right side of his brain was part of his vision.
But today he is an active loving child with a 10-year-old brother, Connor, and a 12-year-old sister, Codi.
The Miles for Kyle event is held each year in large part to spread the word about the effectiveness of the surgery for proper candidates, said KC and Dr. Lachhwani, one of 180 runners — plus 60 walkers — who ran the Kyle 5K.
The doctor said there is 70-80 percent cure rate for those who have surgery. Medication results in only about a 10 percent cure rate, he said.
The Cleveland Clinic performs surgery on about 100 pediatric epilepsy patients each year.
Surgery is performed on those who have hundreds of seizures each month and who have not responded well to medications.
He said he has not lost a child to surgery and the operation "is really removing nonfunctioning portions of the brain" to preserve functioning parts of the brain.
After last year's Miles For Kyle run a Chicago couple read about the event online.
Their child's medical condition was identical to Kyle's.
The couple spoke with the Butts about their experience with Kyle then decided to have surgery on their child, the doctor told the crowd.
"I am pleased to report their son is seizure free," the doctor said.
About 1 percent of the population in the United States has epilepsy. That's 3 million Americans, and 1.5 million of them are children, the doctor said.