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FOND DU LAC, Wis. (AP) — Conjure up an image of epilepsy, and the words "helpless" and "terrifying" come to mind.
Historically, those with this silent brain disorder are often misunderstood, even feared, because of the stigma surrounding an epileptic seizure.
The Micolichek family of Fond du Lac is hoping to raise awareness and understanding of a disease that causes them to live moment to moment. Craig Micolichek just turned 16, but he can't drive a car or go out alone by himself. While he longs for independence, his uncontrolled epilepsy prohibits him from experiences other teens his age are going through.
"The biggest part for me to deal with is the frustration, knowing that I can't do everything I want," Craig told The Reporter Media (http://fondul.ac/1afv8V1 ). "Because I know I can do it."
The Fond du Lac High School student has intractable epilepsy, which means his seizures cannot be controlled. He is on his ninth medication, and while the drugs reduce the number of seizures Craig experiences, the long-term use of such medications affect his memory and ability to process information. At school, he attends a cognitively delayed program.
"It's amazing, for what he goes through each day, he keeps a smile on his face," said his mother, Deb Micolichek. "His teachers tell me what a great kid he is, how he likes to joke and tease and have fun."
Epilepsy affects more than 3 million people in the United States and 50 million people worldwide. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined, according to the Epilepsy Foundation. In addition, one in 10 people will have a seizure during his or her lifetime.
When Craig was born, he had a bleed in his brain and a stroke. He spent the first weeks of life at Children's Hospital of Wisconsin in Milwaukee. As an infant, his seizures caused him to stop breathing.
The area of his brain that is damaged trips the seizures, Deb explained. The family essentially schedules their lives around the unpredictability of when they may occur.
"Craig was a huge downhill and water skier, but now he's too big to enjoy those sports. Two summers ago, he had a seizure in the water and it was scary," his mother said. "He loves to be active and go for bike rides, so we go with him, but it's not relaxing because we are afraid he might get hurt."
Still, their ultimate goal as parents is to help him lead as normal a life as possible.
"The unpredictability is hard for him and everyone," said Craig's father, Pete Micolichek. "Just thinking ahead I wonder, where will my son work? What will he do? Can he have a family? These are the things we want for him, and he is perfectly capable of doing everything."
Dr. Kurt Hecox, chief of pediatric neurology and the comprehensive epilepsy department at Children's Hospital, said there's no question emotions run high when a parent has to watch their child going through a seizure. He explains that tonic-clonic convulsions — the kind that include violent shaking and the entire brain — are not the type of seizures most epileptics experience. More common are complex-partial seizures, which are set off by a specific area of the brain.
"If it's happening in the area where smell resides, a patient can have the sense they smell a bad odor. If it hits in the area of vision, their sight will be affected. Sometimes a seizure can be as subtle as a patient feeling confused," he said.
Hecox is treating 13 children with epilepsy, and of those, only three of them have any motor signs as an indication they are seizing, he said.
"Having a seizure is not a rare problem, it's common, and most people have no other impairment," Hecox said. "People talk freely about conditions like asthma, and no one is fearful, yet there are more deaths and cataclysmic events associated with it than epilepsy."
In Craig's case, brain surgery may be an option, Hecox said. A team of scientists, neurologists and surgeons at Children's is studying his case.
"We have spent hours talking about Craig. He's a great kid and they are a great family and he deserves not to carry this burden," Hecox said.
But surgery is a serious option to consider. Craig's parents said they were told years ago that surgery could cause their son to become blind. His sight is already compromised, so they struggle with making the right decision and know that the future is something they need to explore.
"Craig might have up to three seizures a day, and it's not every day, it's very erratic," Deb said. "He is actually very strong about it. He tries to bounce back as fast as he can, but he has his moments of disappointment."
Deb gives credit to the outstanding support systems and medical teams in place at all three schools her son has attended in Fond du Lac.
His care calls for specific plans of action that include a resting place where he can be monitored during recovery. His teachers at Fondy High include Alicia Konen, Kelly Auchue and Judy Goebel. Assistants Anna Haskey and Erin Werner make it possible for him to meander through the school hallways, enjoy lunch in the cafeteria and attend classes like woodworking and physical education outside his CDB classroom.
Schools in the Fond du Lac School District recognized Epilepsy Awareness Day on March 26 by dressing in purple. Craig's support team decorated the room, and Craig received a purple-flowered perennial to plant at home in his yard.
"Our goal is to grow awareness in our own community," Deb said. "We want those living with epilepsy to know that they are not alone, and those not living with epilepsy to understand it and support those who have it."
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Information from: The Reporter Media, http://www.fdlreporter.com
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