The fragile figure laid beside the ventilator.

The nurse put him on the bed as Heidi Doe, his mother, laid next to him and asked if she could hold him.

It was not long before little Lukie stop breathing and died in his mother's arms.

"I re-lived that moment for the first two months after he died," Doe said with teary eyes and a crackling tone.

Doe and her friend Vickie Spyhalski met this summer and decided to form a support group for people and their families, who have epilepsy. The group serves Freeborn and Mower counties.

Lucas, or Lukie as the Doe's called him, died last summer a month-short of turning two. Lucas was born with Cerebral disgenesis. His brain did not form properly, causing continuous seizures.

"The doctor told me that he was having seizures even before he was born. Right after he was born, they flew him to the Mayo Clinic," Doe said.

There is no history of Epilepsy or brain malformation in the Doe's families, which made the situation even harder for the family to understand. Doctors found no genetic reason, or factors during Doe's pregnancy that would determine the malformation.

"He was a learning case even for the doctors, because he was so young and they had to experiment with various medications," she said, adding the condition of her son lead her to do extensive research.

"I learned so much during these past two years and it just seemed like a waste to sit and not share it with people out there that are experiencing or living in a similar situation. I remember feeling like I was completely alone and did not have anyone. It is why we think this group could help many people," she said.

Lucas' condition was so severe that he would have seizures every day. It got to a point when he would have one every 15 minutes.

"Watching a child having a seizure is like watching them bleed. Your hands are tied back. You either wait for the blood to clot or let them bleed to death," Doe said

Epilepsy is a neurological disorder of the brain that is characterized by the tendency to have recurring seizures. According to the Epilepsy Foundation of America, a seizure disorder is produced by temporary changes in the electrical function of the brain, causing seizures which affect awareness, movement and sensation.

Seizures are classified into two types; the excessive electrical discharge involving both sides of the brain is known as primarily generalized seizures. Partial seizures are abnormal burst of electrical activity only in parts of the brain. The cause for most seizures cannot be identified according to literature on the disorder. People can also have seizures after a head injury, brain tumors or stroke.

The disorder can be treated with surgery, but it depends on the individual. Some may not be candidates for surgery.

Because Lucas' brain was so malformed, he was not a candidate for surgery. The disorder can be control with medication, but basically it varies from case to case.

"It is not something that you can put in a petri dish. It is not a bacteria or a virus. It is all trial and error because everyone is different," Doe explained.

The experience is like sitting in front of the TV watching a show, then the 'off' button is pressed and everything goes blank and dark. Everything is lost, the hearing, seeing, feeling; there is no sensory

account of what has just happened. Confusion and fear are the first reactions said Spyhalski, an epileptic who met Doe at a fundraiser walk last summer.

Spyhalski said her medication has been effective in keeping her seizures under control for the past 20 years. "I really don't remember, the only way I could tell was because there was some time I could not account for"

Spyhalski remembers how difficult it was when she was a teenager and first diagnosed.

A medication that would suit her had not been figured out, so she found herself trying many different ones.

"I would be talking and in the middle of my sentence, my mouth would stop moving, my eyes would get blurry. I had no sensory perception at all." Spyhalski said.

The type of seizures Spyhalski experienced are called absence or petit mal seizures. These are brief episodes of staring. Persons who suffer from absence seizures usually don't realize they've had one, and are alert and attentive immediately afterward.

Spyhalski considers herself fortunate because of having been able to control her seizure with a medication that worked for her.

Statistics show that epilepsy affects more than 60,000 Minnesotans. It affects more people than Parkinson's Disease, Cerebral Palsy, Multiple Sclerosis, and Muscular Dystrophy-combined. Approximately 181,000 new cases of seizures

and epilepsy occur each year and 10 percent of the American population will experience a seizure in their lifetime. Other statistics in medical literature state that one in thirty chance of developing Epilepsy.

"You would not know this because you just don't hear about it. There is a lot of misconception and stigma about this disorder. A person is not possessed by the devil; it is not contagious, you're not supposed to put anything in their mouth or try to restrain them." Spyhalski explained.

Doe agreed that people just don't talk about it. For Doe, it's important for people to understand that is it is nothing to be afraid of.

The groups meets at ARC/Our Place. For information call Spyhalski at 437-6748 or Doe at 437-2924.

Roxana Orellana can be reached at 434-2214 or by e-mail at roxana.orellana@austindailyherald.com