Infantile seizures and animal model

Researchers have developed a mouse model of infantile spasms, which may help in the development of new treatments for this kind of epileptic seizure afflicting young children.

Infantile spasms cause a sudden bending forward and stiffening of the body, arms and legs. The seizures, which typically last one to five seconds, occur in clusters of two to 100 at a time. There are few available treatments, according to background information in a news release.

In two studies presented this week at the American Academy of Neurology's annual meeting in Boston, researchers outlined a mouse model of infantile spasms that produces effects similar to that seen in humans.

"Infantile spasms can last for months to years in children. Having an animal model that resembles this long duration is likely to be useful to analyzing the evolution of this disease, and how it is best treated in different stages," study author Dr. O. Carter Snead, of the Hospital for Sick Children in Toronto, Canada, said in a prepared statement.

"Since children with this disorder often develop it without any apparent cause, such a mouse model will also improve the likelihood of finding new treatments," study author Dr. Miguel Cortez, also of the Hospital for Sick Children, said in a prepared statement.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about infantile spasms.

Magnets vs. seizures

Magnetoencephalography (MEG) allows physicians to see the brain working. Being able to watch the brain as it functions allows doctors to diagnose and treat conditions and diseases with more accuracy than ever before. Patients with epilepsy, malformations or brain lesions could benefit from this technology.

There are not very many MEG centers in the United States right now. The technology is new and the equipment is very expensive, several million dollars for each unit.

MEG works by mapping magnetic fields from neurons in the brain. Unlike functional MRI, which measures brain activity indirectly through changes related to blood flow, this technology measures brain activity more directly and precisely. This imaging system can pick up activity nearly the moment it happens, allowing doctors to better pinpoint which part of the brain correlates to an action or symptom experienced by the patient.

Dr. Richard Bucholz, chief of neurosurgery at St. Louis University School of Medicine in St. Louis, Mo., says knowing more about how a person's brain works before surgery is very important.
"Imaging technologies like magnetic resonance imaging and CT scans are very good at detecting and depicting the anatomy of the brain. They can show us where a tumor is, for example. But increasingly, in neurosurgery, we're having the issue of where function is located in the brain. It is one thing to know where a tumor is located, it is an entirely different thing to know, for example, where speech is located," he said.

Magnets for the brainMEG measures the brain's magnetic signals for a more direct and precise reading than MRI.

Bucholz says most brain tumors can be removes. The problem surgeons and patients face is whether or not crucial portions of the brain will be damaged during the surgery.

"In the past, the way that was determined was by looking at the normal functional anatomy of the brain, where the motor-cortex was in the normal person, or the speech cortex in the normal person, and then assume that the patient had the same sort of functionalization," Bucholz said.

However, thanks to new imaging technologies, researchers have discovered not every person's brain functions in the same way. Also, tumors often push crucial parts of the brain to another location.

"We have found in numerous examples we can actually go in and take out a brain tumor, which was thought to be non-ressectable by other surgeons. That is one of the reasons why we are so very excited about this technology, that it may empower us to perform surgery and remove tumors in many more patients than we would have thought otherwise based solely on CT and MRI," Bucholz said.

The data gathered by MEG can help surgeons in the operating room. The information is put into a navigational system the surgeon can see while in the operating room.

Patients with epilepsy can have relief from relentless seizures if doctors can pinpoint the exact area of the brain causing the out of control electrical activity behind the seizures. MEG allows physicians to see which areas of the brain are active during a seizure.

"I think that we may have MEG on the very cusp of a very bright future of being able to identify where abnormal function is coming from, be it seizures or movement disorder," Bucholz said.

Surgery to relieve seizures performed for the 100th time!

Barrow Neurological Institute at St. Joseph's Hospital and Medical Center recently performed its 100 th hypothalamic hamartoma (HH) surgery.

Hypothalamic Hamartoma is a rare benign brain tumor that causes gelastic seizures in infancy. Without treatment the tumor can cause severe seizures, damage to the brain and lead to progressive cognitive impairment, extreme rage and/or precocious puberty as children age.

The hospital reached this surgical milestone last Friday when Harold Rekate, M.D., director of the Pediatric Neurosurgery Program at Barrow, operated on Devin O'Day, 18, of Las Vegas. Devin, who began having seizures soon after birth, was diagnosed with Hypothalamic Hamartoma in 2005 after she began experiencing rage attacks, cognitive decline and approximately four seizures a day.

"I'm so happy that treatment options are available for people with HH and am thankful for the Barrow team who treated me," says Devin.Because hypothalamic hamartomas lie in a portion of the brain that is hard to reach without causing severe damage to vital areas, removal of the tumors have been considered extremely difficult if not impossible. In 2003 Barrow adopted a surgical approach that has proven successful in reaching and removing the tumors and has developed a new endoscopic technique that allows the mass to be removed through a very small hole drilled in the skull and without a formal open craniotomy.

"It's rewarding to know that Barrow's HH team has made an impact on so many children and young adults within the last four years," says Dr. Rekate. "The majority of our patients are now seizure-free, are able to think better and control the rages that sometimes accompany this condition.

"Barrow opened the first Hypothalamic Hamartoma center in the United States in 2003 and has treated children from all over the world. It is the only comprehensive center in the nation to provide such services.

New research links certain genes to febrile seizures

Researchers have localized two new genes that are associated with fever-related seizures that occur in infancy and childhood, according to a study published in the April 24, 2007, issue of Neurology®, the scientific journal of the American Academy of Neurology.

“Identifying the genes responsible for febrile seizures could improve the understanding, treatment and even prevention of this disorder,” said study author Rima Nabbout, MD, PhD, of the French Institute for Medical Research (INSERM) in Paris.

Fever-related (febrile) seizures are the most common seizure disorder in children and affect two to five percent of children by age six in the United States. For most children, the seizures do not cause permanent brain injury and occur only once or a few times. A small percentage of children go on to develop other seizure disorders such as epilepsy later in life.

The study examined four generations of a French family. Of the 51 people in the family, 13 had childhood febrile seizures. The febrile seizures stopped by the age of seven for all 13 children. However, six of the children developed epilepsy later in life. The 13 affected by the disorder and 13 additional family members not affected by the disorder took part in the genetic study.

The researchers used a technique called genetic linkage to determine which segments along chromosomes were shared by all family members who had febrile seizures. All of those affected shared a portion of chromosome 3. Chromosome 3 has not previously been reported to be associated with febrile seizures.

The researchers also found that the family members who developed epilepsy shared another common segment on chromosome 18, providing evidence that the gene on chromosome 18 might act as a modifier gene. The gene on chromosome 18 may also be associated with febrile seizures.

Previous studies have identified four other loci that are associated with febrile seizures.

Seizures, explained from a different angle!

The human brain is composed of about 100 billion neurons, which normally carry on business with a low electrical hum.

These signals can be measured as brain waves that seem to fluctuate slightly in no particular pattern.However, in about 2.5 percent of Americans and 1 percent of the world’s population something unusual happens. The nerves start to fire in lockstep.

The synchronized signals radiate throughout the brain repeatedly for one or two minutes, then abruptly stop.It is more than an internal phenomenon. While the brain cycles through its abnormal sequences, the person possessing the pinkish, three-pound organ loses control and experiences strange feelings and emotions, convulsions, muscle spasms and possibly loss of consciousness.

This is a seizure, and it is an unpleasantly common, unavoidable and unpredictable part of life for people with epilepsy.Many people with epilepsy — actually a grouping of similar disorders — can keep the seizures under control with medication. Drugs help about 80 percent of these patients.

Some, however, cannot tolerate the side effects.That leaves about 1.8 million people in the United States with no way to control their seizures.Now, Yale University and about 23 other centers around the country are testing an implantable miniature computer with sensor electrodes that can detect seizures before they happen and counter them.

The Responsive Neurostimulator, or RNS, is a metal case about 3 inches long, 1½ inches wide, and a third of an inch thick. Made by NeuroPace of Mountain View, Calif., the RNS has been approved by the U.S. Food and Drug Administration as an investigational device.It is curved to match the shape of the cranium, and contains a battery-powered microprocessor designed to detect abnormal electrical activity in the brain and deliver a short series of electrical signals to pull the brain back to normal.

The device fits in a small hole made in the skull and is held in place by screws and other hardware.One lead from the device contains sensors to monitor brain activity. Another line is guided to the point from which the seizures seem to propagate. The small unit is able to record encephalograms and its software can be adjusted.Dr. Robert B. Duckrow, associate professor of neurology and neurosurgery at Yale, who is conducting the tests here, said the idea of brain stimulation is not new.In the past, stimulation has been used to study the function of the brain. In the 1970s, New York neurosurgeon Irving Cooper found that he could cause epilepsy by electrically stimulating a part of the brain called the cerebellum.

Therapeutic use of stimulation is now back in favor, Duckrow said.Pulses were first found to be effective in some patients with Parkinson’s disease, which led researchers to try the same approach on other parts of the brain in hopes of stopping seizures, he said.Dr. Kenneth Vives, director of the stereotactal and functional section of the department of neurosurgery at Yale, said seizures can result from head trauma, stroke, infection or from a genetic predisposition.Often, the seizure-causing part of the brain is anatomically abnormal. There may be a tumor or a vascular irregularity, for example.It is possible sometimes to alleviate seizures by removing the offending section of brain. However, not all seizures are precisely focused.

"You cannot remove all parts of the brain," Duckrow said."We use the device when the seizure area is near an important area. For example, movement or language. The device would be used instead of resection. Surgeons also avoid removing pieces of the brain near the hippocampus, which is important to forming memories."The chief complaint of people with epilepsy is that they don’t know when a seizure is going to happen," he said.Some patients report strange feelings before they have seizures.

Others simply wake up "knowing" that they will have a seizure that day, he said.The RNS is designed to stop seizures by catching the preliminary signals before they can amplify and spread.Before the device is implanted, surgeons use an array of electrodes to pinpoint the origin of the seizures. Then the lead of the RNS is placed accordingly. A set of electrodes monitors brain waves, and goes into action if it detects the signals becoming regular and synchronous.The lead fires in one of several patterns to step the seizure before it starts.

If the first attempt fails, the RNS keeps trying.Eventually, the RNS probably will be equipped with an induction device so that the battery can be replaced with a rechargeable unit. The device is also designed so it can be upgraded or reprogrammed.The safety and efficacy of the RNS unit has been sufficiently demonstrated and the FDA has given permission for a larger study to see how well it works.Yale has so far implanted two of the devices of a total of eight nationwide.

Yale-New Haven Hospital is the only site in Connecticut implanting the devices.Eventually, about 75 people will be recruited.Duckrow said a similar approach might be useful for other problems, such as obsessive compulsive disorder. As more targets are recognized, conditions could be treated with more complicated devices, he said.Meanwhile, stopping seizures is a large enough challenge."Hope is an awesome thing to be able to give to people," Vives said.

Abram Katz can be reached at akatz@nhregister.com or 789-5719.

Young child's life is affected by Epilepsy

As the children in the Tender Loving Kare kindergarten enjoyed a Valentine’s Day party, 6-year-old Peter Serwik’s mind went blank and he fell out of his chair.That’s the last time he had a seizure – a vast improvement from his infancy, when Peter would experience about 30 a day.Peter has epilepsy, a condition defined by seizures. On Wednesday, he’ll address the nation’s leaders on Capitol Hill as the Delaware representative for Kids Speak Up!, a national program in which children petition congressional leaders for money for various diseases and disorders.

“If we don’t get [money] we’ll have seizures every day,” said the young Middletown resident.An estimated 2 million Americans have some form of epilepsy, including about 10,000 in Delaware. Half those cases are like Peter’s, in which the cause is unknown.

Epilepsy also can result from head trauma, brain tumors, poisoning, infection and maternal injury, among other problems.Abnormal electrical discharges in the brain cause seizures, disrupting the usual brain activity. Prolonged seizures lead to as many as 42,000 deaths a year in the United States, according to the National Epilepsy Foundation.

But most seizures last less than five minutes. While a person having an attack may look as if he’s in pain, he’s usually unaware of what’s happening. Still, seizures can put people in precarious situations. Dr. Donna Stephenson, Peter’s neurologist, recalls a patient who drowned in her bathtub after a seizure. Other patients have broken bones.

“The last thing some people remember is the event that led right up to them having the seizure,” she said.That’s what it was like for Peter on Valentine’s Day. He can’t fully explain what a seizure feels like, but he knows he wants it to stop.“It’s scary when my body starts shaking, and when it’s done I’m still scared,” he said.

Early diagnosis

Several months after Peter was born – five weeks early, on Nov. 8, 2000 – Ellen and Piotr Serwik noticed their son couldn’t crawl far without falling over.They took Peter to Stephenson, who works at Neurology Associates in Newark, and he had a seizure during the exam. He was diagnosed with idiopathic epilepsy, meaning no cause has been identified.A CT scan showed that his problems weren’t due to his bone structure.

MRIs of his brain showed no physical abnormalities. He also had several EEGs, in which electrodes were placed at specific points on his head to measure his brain’s electrical activity. It was determined that abnormal brain waves were being sent from the left temporal lobe, but doctors couldn’t explain what was triggering the attacks. “They’ve located the ‘where’ but not the ‘why,’ ” Ellen Serwik said.

Peter is like other boys his age, but Ellen has to watch out for problems that wouldn’t enter the minds of other parents. For example, if he has a seizure while playing on a jungle gym, he could break a bone. In the past he’s broken his glasses, so he now wears expensive, unbreakable glasses.Baby gates still block the staircase at the Serwiks’ home, since there remains a fear that Peter could fall down the steps during a seizure. The bathroom door remains open, in case he has a seizure while in the tub.

And latches are fixed to the front door, back door, garage door and basement door at a 6-foot-high level, so he can’t wander off.”His motor skills can still function during a seizure and he could walk around, unaware of his surroundings,” Ellen said.Ellen said Peter is fortunate in that he can come out of his seizures on his own. “We’ve never had to call paramedics, but you never become comfortable seeing your child that way,” she said.

Twenty percent of epilepsy cases develop before children turn 5. Many parents know little about the condition when they first hear their child has it, said Barbara Blair, executive director of the Epilepsy Foundation of Delaware, which sends packets of information to the newly diagnosed. Some people who visit the local foundation have experienced seizures their entire lives but weren’t diagnosed with epilepsy until they became adults, she said.“The Serwiks adjusted quite nicely,” Blair said. “Others never get comfortable.”

Finding the proper treatment

Several medications are available to treat epilepsy, but patients have to “find the right drug with the best seizure control with the least amount of side effects for a given individual,” Blair said.Stephenson, who sees Peter every three to six months, said most epileptic medicines work by blocking the spread of the brain’s abnormal electrical rhythms, but each has unique side effects.

Some epileptics experience seizures only at night, so opt not to take medicines. Others are implanted with a device, the vagus nerve stimulator, that sets off a charge to help prevent smaller seizures. Brain surgery to excise the malfunctioning portion is another option.Peter was first put on Topamax. It controlled his seizures but made him highly sensitive to heat. So Ellen put him on Keppra.

That also controlled his seizures, but Ellen said it caused him to become aggressive and have temper tantrums.When they got the results of an EEG that found Peter’s problem was coming from his left temporal lobe, he was put on Trileptal. Ellen said Trileptal makes Peter sensitive to sunlight – although that’s not one of the reported side effects – but she has kept him on that medicine. And instead of enlisting him in a soccer program, she enrolled him in karate classes.“We stopped the outdoor sports and moved him into indoor sports,” she said.

“We have to do a balancing act with the seizure control and the side effects.”Peter will have to be aware of his condition – and the problems it can pose – for the rest of his life, Ellen said. Some people can go decades without a seizure, only to have the attacks return.“You can’t ever get into a comfort zone,” she said. “Because it’s a danger zone.”Contact Hiran Ratnayake at 324-2547 or hratnayake@delawareonline.com.

About epilepsy

Epilepsy is a condition centered in the brain that can cause various types of seizures. Some last only a few seconds and are barely noticeable, while others last minutes and have symptoms such as excessive shaking and frothing at the mouth.About 2 million Americans have some form of epilepsy, including 10,000 in Delaware.

The cause is unknown in half the cases. The condition also may be caused by head trauma, brain tumors, poisoning, infection and maternal injury, among other problems.For more information locally, contact the Epilepsy Foundation of Delaware at 999-9313 or www.epilepsyfoundation.org/delaware.

Source: Epilepsy Foundation of America

If a seizure occurs …

• Keep calm and reassure others.

• Clear the area around the person of anything sharp or hard.

• Put something soft and flat, like a folded jacket, under the person’s head.

• Gently roll the person on one side to help keep the airway clear.

• Do not force the mouth open or put anything in the mouth.

• Do not hold the person down.

• Do not attempt artificial resuscitation, except in the unlikely event that the person doesn’t begin breathing after the seizure.

• Stay with the person until the seizure ends naturally.

• Offer to help the individual get home if he is confused.

Source: Epilepsy Foundation of America

Baseball dream come true, for boy with seizure disorder!

In a week where heartwarming stories were sorely needed, the tale of Joey Walters -- Salem Avalanche's Manager for a Day -- hit a home run.

Joey is the East Montgomery High School freshman who longs to play baseball. Most kids his age have years of Little League practice behind them, so when the call goes out for the junior varsity team tryouts, they're ready. Not Joey.

Instead of shagging balls, he's been benched by epilepsy. For the past decade, regular seizures and two brain surgeries have kept him on the bleachers.

But now, things are different. Even Joey's doctor, University of Virginia neurologist Edward Bertram, thinks so, and wrote a note clearing him to play baseball, even encouraging him to do so.
Trouble is Joey can't hit, pitch and catch like his classmates. So the coach cut him -- even though only a dozen boys wanted to wear the uniform. Can't really blame the coach, who's trying to put together a winning team. Joey's no clutch hitter; heck, he'd probably drop easy pop-ups. Might even get hurt. And those seizures? What happens then?

Of course the kindest thing would have been to hand Joey a uniform, call him a bat boy, a water boy, a team manager. Something. Let him warm the bench and send him in at the top of the ninth when a game is already won.

But kindness wasn't on the roster.

So Joey learned a big lesson: Life's filled with more strike outs than hits. His potential teammates didn't get a chance to learn a different lesson: the one about working as a team, even when one members is, well, a little different.

That might have been the end of Joey's season. But there was another lesson left to learn: Sometimes compassion hands you an extra inning.

The Salem Avalanche taught it well in letting Joey take the field Thursday as their team manager.
The minor leaguers know what it is like to dream of playing ball, and a few players plan to help Joey learn the skills.

To that, we can but add: Wait until next year, Joey. You'll get 'em.

Epilepsy Awareness starts in class!

Christine Canniff says she could use a little help spreading awareness about epilepsy and seizures. "I'm looking for volunteers," said Canniff, the new education outreach co-ordinator for Epilepsy Support Centre, which serves Sarnia-Lambton. Hired last month by the London, Ontario-based organization, Canniff is a resident of Chatham-Kent and recently obtained her bachelor's degree in psychology from the University of Waterloo. She also possesses a diploma in social work from Fanshawe College in London.

As part of her job, Canniff, who also serves in the same capacity for the Epilepsy Support Centre in Chatham-Kent, will offer an education program on epilepsy to all Grade 5 classes in the community. The program provides helpful information about epilepsy and teaches students "how to recognize different types of seizures and seizure first aid," said Canniff.

The Grade 5 program is the one that needs help with a puppet presentation, she said. Canniff is available for free presentations to workplaces, community groups and school staff. She'll also provide advocacy and support for families affected by seizures and seizure disorders. "We have a peer-to-peer mentoring program, so if there is someone that is newly diagnosed or struggling with epilepsy, then we can maybe hook them up with someone else in a similar situation," she said.

An estimated one in every 100 people are affected by epilepsy and 70 per cent of people diagnosed with epilepsy have seizures controlled with medication and may never disclose their disorder. Most lead healthy and normal lives. Canniff said those with epilepsy are afraid of having a seizure, especially in public, and the general public would be afraid of seeing someone have a seizure and not know what to do to help. "Education eliminates the fear and anxiety on both sides," she said. For information call 1-866-EPILEPSY (1-866-374-5377) or e-mail Canniff at epilepsysupport@cogeco.ca

Senate vs. Epilepsy

When Brenden Chappell had problems in the second grade in a Kansas school because of epilepsy, his teacher’s answer was to put his desk at the back of the room and make him face the wall.

Brenden suffered a great deal because of his teacher’s ignorance that year, the same year he was diagnosed with a type of epilepsy that causes absentee seizures.

This type of seizure means Brenden “blanks out” and stares into space for a few seconds. He also has partial seizures that cause him to do odd repetitive behaviors such as sniff loudly or pull at his hair. He doesn’t remember these lapses, which are caused by brief electrical disturbances in the brain.

During the second grade, Brenden was punished for his odd behaviors, was sent to the principal’s office repeatedly and was abused physically and verbally by other students, which his teacher did nothing to stop, said his mother, Cecilia Curry.

Curry has learned a lot about her son’s disability and is encouraging his teachers at Paonia Elementary to learn more, so her son can get the education he needs and deserves, she said.
Brenden, now 11 years old, is also fighting back, and at the invitation of the Epilepsy Foundation, he will represent Colorado at a Kids Speak Up for Epilepsy program April 22-25 in Washington, D.C.

Brenden will talk to about 25 senators at a time, since larger crowds raise his stress levels, and he will meet individually with Colorado Sens. Wayne Allard and Ken Salazar and Colorado 3rd Congressional District Rep. John Salazar.

His message is simple: Provide more funding for schools to deal with disabilities such as epilepsy.

“I’m just like any other kid, and there are 300,000 kids with epilepsy in the U.S.,” he said. “I just want them to give more money to schools for epilepsy because when I was first diagnosed, they didn’t have anything to deal with it.”

That initial experience with a school that didn’t want to deal with his problem damaged Brenden’s self-esteem, said his mother, and eventually led to his being expelled.

“Schools should be regulated on how they are treating kids with epilepsy so they can get educated,” Curry said. “They need it, and Brenden is very intelligent.”

Curry said her family has been in Paonia for about a year, and Paonia Elementary only started to develop a special program for Brenden after learning he was going to speak to legislators at the Capitol. As a result, he’s doing better in school and is more sure of himself, she said.

Medication cannot control Brenden’s seizures, but he desperately needs the understanding by his teachers on how to deal with his disability, his mother said.

For example, when he takes a test, he needs to be put in a separate room, because taking it in front of his classmates raises his stress level, which brings on his seizures. To demonstrate, Curry showed a test where Brenden had scored a 56 when given the test in the classroom, but when he took the same test in a separate room, he scored 85.

“The misconception is that he was being defiant, but his stress level can cause seizures,” Curry said.

Paonia Elementary is now trying to meet Brenden’s needs, which his mother said is his right under Section 504 of the Rehabilitation Act of 1973, which requires school districts to make programs and activities usable by all students with disabilities.

According to the Epilepsy Foundation, Congress also needs to recognize the importance of the Americans with Disabilities Act passed in the early 1990s, because it has been watered down in recent years, especially for people with epilepsy, according to a foundation report.

“Several recent Supreme Court rulings have made it difficult, if not impossible, for people with epilepsy to bring forward discrimination cases as the courts cannot determine if the person is disabled enough due to medications they take,” the report states. “The Epilepsy Foundation supports an ADA Restoration Act to fix problems with the definition of disability.”

Education is particularly important to epileptics, Curry said, because they just can’t make it as construction workers.

Brenden said he wants to be a lawyer when he grows up, but not because he’s witnessed his mother’s struggle with his schools.

“I’ve had a lot of practice arguing with my parents,” he said. “But I still get grounded.”

Surgery, a blessing in both best and worst scenarios!

David Hedrick is an Earnhardt fanatic, if not an Earnhardt expert. Ever since he was 5 years old, the Tyler resident has followed the racing family's every move around the track.Even that tragic one.Hedrick, 22, will be living the dream Sunday at the Samsung 500 at the Texas Motor Speedway. He has been invited to attend the race as a guest of Dale Earnhardt, Jr. His day will include lunch with Junior and watching from pit row, and his night will include partying with the drivers.

"He is so excited," Hedrick's grandmother, Susie King of Tyler, said. "He cannot comprehend all that is fixing to take place for him."What makes Hedrick getting to attend the race in VIP capacity so exciting is the life he has lived, one that is a continuous battle. Having been diagnosed with mild to medium special needs at age 12, he is the victim of daily seizures.Sadly, that's not all.In May, he is scheduled to have two major brain surgeries. If he opted to not have them, doctors have said he would likely end up in a vegetable state or "be blessed with death," Mrs. King said.

Four years ago, his mother was killed in a motorcycle accident. Within six weeks after her death, two of his dogs passed away.But Hedrick, who went to live with his grandparents after his mom's passing, is a survivor. He has been collecting everything that is Earnhardt for years. Replica cars. Shirts. Hats.His first fascination was with Earnhardt Sr., who tragically lost his life at the 2001 Daytona 500. His second fascination was with Junior, who took over the family reins en route to winning two Busch Series championships.Look in Hedrick's room, all you will see is No. 8.

Look into his mind, you will find an uncanny knowledge of Junior and Senior."I'm so excited," Hedrick said. "I have never met Earnhardt. I'm going to be happy."Said Mrs. King: "His favorite sport is NASCAR. He eats it, lives it and breaths it. Anything anybody needs to know about Earnhardt Jr., David can tell them. If it comes to Earnhardt and something he's accomplished, that young man has got it down to a fine art."Hedrick's trip to the race was made possible by a family friend, Carl Crawford of Tyler.

Crawford contacted the Junior camp and told them of Hedrick's situation.And ... voila."David's a good boy and he deserves that," Mr. Crawford said. "The day the tickets came, it was kind of a tearful deal. To make somebody's wish come true, it's just amazing. A lot of people don't realize what these kids go through, and there are so many things they don't get to do because nobody steps out and helps.

My enjoyment in life is getting to see other people enjoy."Said Mrs. King: "I just thank God for Carl Crawford because that's the only way David could do it. David has had a lot of grief in his life."Once the race is complete, and Junior and Hedrick paint the town of Fort Worth on Sunday night, much of Hedrick's family will turn their attention toward May 15 and 18 - the surgery dates.

According to Mrs. King, doctors have given Hedrick's surgeries a success rate of about 95 percent. By that, they mean his best-case scenario would be no more seizures and his worst-case would be controlled seizures.If successful, the surgery will allow Hedrick to possibly read and get a driver's license. Utterly, Hedrick getting to drive makes complete and poetic sense. His greatest passion involves cars.

To one day build his own race car is his biggest dream. It would be a car he could spin around dirt tracks like two of his uncles do every Saturday night, with Hedrick serving on their pit crew."That's everyone's dream," Mrs. King said.

New type of brain mapping

Epilepsy is a condition characterized by periods of disturbance in the electrical activity in the brain. According to the Epilepsy Foundation, more than three million Americans have epilepsy. About 200,000 new cases occur each year. It can develop at any age, but most commonly appears during childhood or old age.There are two main classes of seizures: generalized seizures and partial seizures. Generalized seizures affect both sides of the brain from the onset.

They can be further classified into several categories. Myoclonic seizures are characterized by rapid twitches of the muscles in the upper body, arms or legs. They usually affect both sides of the body at the same time. Atonic seizures (sometimes referred to as “drop attacks”) cause a loss of muscle tone, leading the head to drop or the person to suddenly fall down. Absence seizures (also referred to as petite mal seizures) cause a sudden lapse of awareness. These seizures are usually brief and may be described as “staring into space.”

General tonic clonic seizures (grand mal seizures) are the most common type of generalized seizure. They start with stiffening of the limbs and then jerking of the face, arms and/or legs. Patients usually lose consciousness.Partial seizures (also called focal seizures) occur in one specific area of the brain. These types of seizures are more common than generalized seizures. In a simple partial seizure the patient maintains consciousness but may have sudden, unexplained emotions or sensations.

A complex partial seizure causes an altered state of consciousness or loss of consciousness. Patients may engage in unusual repetitious behavior.Locating the Source of Seizures There is no cure for epilepsy. There are several different types of medications for controlling/reducing seizure activity. However, half of all patients continue to have some degree of symptoms. For some, the seizures can be severe and significantly interfere with their quality of life.One option that may be available for patients with uncontrolled seizures is surgery.

Doctors destroy the brain cells in the area where the seizures originate, hopefully eradicating the problem. While surgery can be a very effective treatment, patients must be carefully selected. The seizure activity must be limited to a specific area of the brain and doctors must be able to clearly identify that location.The traditional method to identify the location of seizures is through EEG (electroencephalography) monitoring; 19 to 25 electrodes are placed over various spots on the scalp. The electrodes measure the electrical activity of the brain.

When a seizure occurs, the electrodes pick up the electrical activity throughout the brain. The location of the abnormal signals can be determined by comparing the signals detected by each electrode.EEG monitoring can help confirm a seizure is limited to one side of the brain. However, it only gives a rough indication of the precise location of the abnormal electrical activity. Currently, the only way to pinpoint the precise area of activity is by opening the skull and placing electrodes directly onto the surface of the brain.

The Geodesic EEG A new type of EEG monitoring is called Geodesic EEG. The Geodesic EEG system is a net of 128 to 256 electrodes draped over the patient’s head. The Geodesic electrodes measure brain activity in the same way as standard EEG. However, with so many electrodes and having them spaced much closer together, doctors can get more precise information on the location of seizures.

The Geodesic EEG was approved for brain monitoring by the FDA in 2001. However, doctors are still comparing its effectiveness against invasive brain monitoring. If the procedure proves to be just as accurate, some patients may be able to avoid direct brain surface monitoring. Doctors will then be able to use the information from the Geodesic EEG to determine if a patient is a good candidate for epilepsy surgery.

Seizures are challenging

What is the normal treatment for a single seizure? What would be the risk of a person having a second seizure? What do doctors normally suggest for a very healthy and active senior? Nobody seems to have answers for these questions.

Few things are more challenging for physicians than deciding how to treat a single seizure, says Dr. Kevin Sullivan, a Medford neurologist.

A seizure occurs when abnormal nerve activity in the brain changes the way the body functions. Some people lose consciousness; others may twitch uncontrollably or become aware of unusual smells, such as burning insulation.

"It all depends on which nerve cells are involved," Sullivan says.

A seizure typically lasts just a few minutes, and anybody can have one. A sharp blow to the head, for example, could cause a person in otherwise good health to have a seizure.

Many of the symptoms associated with a seizure also can be caused by other conditions, so neurologists first have to determine whether a patient's symptoms are the result of a seizure or something else. A stroke, for example, could cause a patient to lose consciousness or muscle control, and low blood sugar associated with diabetes also could cause a patient to lose consciousness.

"You have to look at the patient's history," Sullivan says.

Physicians also use a number of diagnostic tests to determine whether symptoms are caused by abnormal brain activity or some other condition.

But even with all the tests that are available, physicians can't determine the cause of about 50 percent of single seizures.

To complicate the picture even more, studies indicate that about half of the people who have had a single seizure will never have another. Physicians and patients have to decide whether the chances of having another seizure justify taking drugs for the remainder of the patient's life.

"Some people say they don't want to ever worry about (a seizure happening) again," Sullivan says. Many of them choose to take drugs and learn to live with the side effects (such as drowsiness, constipation or headache) rather than risk the chance of having another seizure.

Someone who is young and otherwise healthy might choose a "wait and see" attitude rather than face a long lifetime of drug-related side effects to treat something that might never happen again, Sullivan says.

"We hold off (prescribing drugs)," Sullivan says, "and see how they do.
"The bottom line is, it's not an easy call."

From seizures to paralysis

The first time Steve Martinez had a potentially fatal seizure at Saticoy Elementary in North Hollywood, a visiting Marine began CPR, then the school nurse took over — it was one of her two days a week on campus. The alert, skilled response allowed Steve to survive without a disabling injury.The next time he wasn't so lucky.The CPR was ineffective and administered by someone who later testified that she lacked qualifications, even though at least 17 people on campus had the required training.Now the 13-year-old lies paralyzed in a minimally conscious state, requiring around-the-clock care.

A jury last week found the Los Angeles Unified School District liable, awarding the Martinez family $7.6 million.The sizable verdict is the second this year in the wake of a tragedy involving a child. In February, a jury awarded $10.3 million to the family of a first-grader who died in 2005 when struck by a van that jumped the curb of a school parking lot. The school district intends to contest the parking-lot damage award; no decision has been made about the Martinez litigation.

Before Steve's final seizure at school, district staff "never appreciated the severity of the child's problems and the level of supervision and attention needed," family attorney Philip Michels said. "They never understood it despite multiple talks and documents from the mother and physicians. This was a failure of communication among the local school staff, the principal and the nursing supervisorial staff."A lawyer for the district disputes that, saying staff members not only discharged their legal responsibility, they reacted heroically as well. They tried to save the fourth-grader, general counsel Kevin Reed said, but good-faith efforts to administer CPR were simply unsuccessful."These are really, really hard cases," Reed said.

"Any time a kid is hurt it's a tragedy. The people who responded tried to do their best." No one contests that Steve brought serious health problems to school. As a baby, he required heart surgery. Then, in preschool, in another school system, he suffered a seizure, eventually leading to a diagnosis of epilepsy. Even worse, his seizures had a rare, especially dangerous element: They could stop his heart. Still, when the seizures appeared to subside, doctors tried to wean the boy off medication that had undesirable side effects.

Then on May 28, 2003, Steve, then 9, suffered a seizure at Saticoy that led to cardiac arrest. On that day, the Marine and nurse saved his life. But Steve had fallen on the playground atop a metal utility plate that had been heated by the sun. The boy suffered second- and third-degree burns.The family sued successfully over those injuries, which resulted in prolonged hospitalization, skin grafts and extended time away from school. The jury's award was $361,237. While discussing Steve's return to school, the family requested constant one-on-one supervision by someone trained in CPR. Steve's mother, Ana Martinez, notified the school of two additional seizures, at home, that had required CPR.

She declined an offer of free transportation to a school with a full-time nurse. She testified that the other facility was "too far from our home and had too many students." California law does not require schools to have nurses full time, so they frequently have to travel between schools. Ultimately, said Michels, the family attorney, Saticoy staff assured the family that the "school would have an adequate safety plan in place."At first, in January 2004, Steve came to school only on the two days that a nurse was present.

And he stayed in the office for recess, lunch and P.E. "All of his seizures were associated with running or vigorous play," his mother said in a sworn deposition.

Over time, Steve was allowed to join his classmates in the play yard. The school's plan to protect Steve included identifying at least 17 staff members who had or soon would obtain CPR certification so a qualified adult would always be close at hand.On April 18, 2005, Steve fell to the ground while playing on the basketball court.

The family contends that five to 10 crucial minutes passed before CPR began, because no adult was supervising the child and the subsequent response was inadequate. The first adult on the scene did not know about the child's health issues."They were panicked because they were not prepared," Michels said. "But they had every reason to be prepared because of their own experience with Steve, because of the mother and doctors cautioning them, and because they had already been through a lawsuit."L.A. Unified lawyers contend that the adults responded almost immediately.

The school district acknowledges that the CPR did not succeed.Both sides concur that the playground supervisor, who administered CPR, made a heroic effort. She later acknowledged that she lacked specific CPR training. She testified that she had attended most of a one-day first aid course in the late 1960s and had some knowledge of CPR from watching cable TV. The school district pointed out in court documents that another staffer, with CPR training, was assisting her.

The efforts to protect Steve also included training the playground supervisor and the principal on how to recognize a seizure. But no one certified in CPR stepped forward to take charge at the moment of crisis, Michels said.The jury award, he added, includes portions for pain and suffering, loss of future earnings and medical care for a life expectancy that the jury estimated would be about 10 years. Steve was initially diagnosed as being in a persistent vegetative state.

The upgraded diagnosis is "minimally conscious," meaning that the boy can respond, for example, to a request to squeeze a hand. He remains paralyzed, unable to speak or eat and incapable of breathing without assistance. What happened to Steve was a horrible tragedy, said Reed, the district's counsel, but "an adult was at this child's side in seconds. We think school-site staff acted valiantly, with total compassion and a great sense of urgency."

Walking for a cure of seizures

Debbie Forrester will walk 2.2 miles Saturday morning for the Tuberous Sclerosis Alliance of St. Louis and Southern Illinois.

Her 2 1/2-year-old grandson, Stephen Schmitt, has the rare genetic disease, which causes non-cancerous tumors to grow in the brain, heart, lungs, kidneys and other organs.

Forrester isn't walking for Stephen. He'll battle the seizures caused by TS for the rest of his life.
"I guess I'm walking for a cure so all the future parents and grandparents out there don't have a child born with the disease," Forrester said. "I think Stephen is a happy child and my daughter (Jaime Schmitt) and her husband (Eric Schmitt) can give him a good life.

"But he has seizures every day. He has what they call status seizures that can last an hour or longer. He has almost died twice. Maybe some day they will find a cure and children and their families won't have to live through those things."

The Schmitts live in St. Louis and Jaime is the chairwoman of the Step Forward to Cure TSC walk, which will be held at Creve Coeur Park in Maryland Heights near St. Louis. Forrester participated in the walk last year.

Forrester is part owner of Coney Island on North Henderson Street.

Deb Forrester sits along a counter at Coney Island, 1120 N. Henderson St., Wednesday afternoon. Forrester will walk 2.2 miles Saturday morning for the Tuberous Sclerosis Alliance of St. Louis and Southern Illinois. "We have relatives from Chicago, Des Moines and Omaha who are all meeting in St. Louis to take part in the walk," she said. According to the National Institute of Neurological Disorders and Stroke, TS may be present at birth but the symptoms are hard to detect and often take time to develop. The tumors in and around the brain can have devastating effects on a child's development - including seizures, mental retardation and behavior disorders.

The Schmitts discovered Stephen's TS when he was an infant, but the diagnosis was the result of a chance visit to a dermatologist.

"Stephen had some pigment loss on one of his legs," Forrester said. "They put him under a special light to see if it could it was a first sign of TS and he lit up like a Christmas tree."
Forrester said if you just looked at her grandson, you might never know he is afflicted by an incurable disease. But he does not speak and suffers from autism.

"He looks like a big, happy little boy," she said. "But he has never been to my house. He requires care on a daily basis. And Monday through Friday, he is in some form of therapy - occupational, developmental and speech."

Forrester said the hardest part is watching her daughter and son-in-law face the daily challenges of caring for a child with TS.

"Stephen was my first grandchild. He's my only grandchild and of course I had dreams for him," Forrester said. "But the hardest part is watching Jaime and Eric cope. They have had to stand by and watch their child almost die.

"They have had to make decisions most parents never have to face. I worried about it hurting all of them, but it seems like they have grown as a family."

Forrester returned to the bigger picture.

"I'm looking forward to the walk and feeling like I'm raising money to help," she said. "There are two babies born with TS each day in the United States.

"That doesn't sound like a lot. And it isn't. But maybe we can change that just a little."

Those who want to sponsor Forrester's walk can call her at 343-2912 or stop by Coney Island on North Henderson Street.

Vaccination linked to seizure disorder!

As a baby, Cory Wiltse got a bad vaccination that left him severely disabled.

Now 17, he has the cognitive ability of a 3 or 4 year old. There are days when he's feeling fine and others when he becomes a combative "gorilla," dad Chris Wiltse said, or all he can say is "Cork sickin'" — signaling to caregivers that a seizure is about to rip through his system.

Cory takes eight medications every six hours, and two more as needed to control the seizures that deteriorate his body and mind. His mother, Tani, wakes at 5:30 a.m. to crush the first round of pills. His father stays up until midnight to give him his last dose of the day.

Cory's younger brother, Tyler, is a 16-year-old athlete and honors student. Cory, however, needs constant supervision. His parents pray that each seizure will not be his last.

Chris and Tani Wiltse, both 43, have fought with the state for years over Cory's care. After losing their latest battle in February, the Battle Creek couple is trying to find how best to care for their son.
Cory was healthy at birth, but after his first DTP vaccination, the "very next day he's screaming with a high-pitched fever," Tani Wiltse said.

His first seizure came five days later.

His parents suspected the shot Cory got from his pediatrician in Grand Rapids, where the family lived in 1989. The doctor disagreed.

Statistically, one out of every 1 million doses of the vaccination against diphtheria, tetanus and pertussis, also known as whooping cough, will cause severe complications. They include long-term seizures, coma, permanent brain damage or death, according the U.S. Centers for Disease Control and Prevention.

Because a severe reaction is so rare, the agency reports, it is difficult to tell if the problem stemmed from the vaccine.

At least two other children who received the same batch of DTP vaccines had severe reactions, the Wiltses said.

The Washington-based National Vaccine Injury Compensation Program was created by the federal government in 1988 to help pay for the care of those who have been harmed by vaccines.
"That would take care of Cory for the rest of his life," Tani Wiltse said.

But the Wiltses didn't know about the program until after Cory's brain surgery in 1993. They spent the first four years of Cory's life traveling around the country looking for a cure for his intensifying seizures.

Although insurance covered 80 percent of their medical bills, the Wiltses said they took out a $60,000 loan to pay the rest.

At the Children's Hospital of Michigan in Detroit, a surgeon removed from 4-year-old Cory's brain a portion the size of a "peach pit," Chris Wiltse said. The procedure reduced the length of Cory's seizures from 1 hour to 5 minutes and cut the number from more than 100 per month to between 40 and 60 per month.

Laboratory analysis on the brain portion removed revealed his brain had been traumatized when Cory was 8 weeks old — the same age he got the vaccine. With that evidence, the Wiltses applied for assistance through the National Vaccine Injury Compensation Program.

But they missed the 36-month post-injury deadline.

Tani Wiltse and other family members cared for Cory at home until 1998, when he was approved for private-duty nursing paid through the Michigan Department of Community Health.

An on-call registered nurse provided medical care at home, reducing Cory's hospital and emergency room visits by 91 percent, the Wiltses said. The at-home care also allowed Cory to be discharged from the hospital sooner.

But in November, the department said Cory no longer fit the criteria for private-duty nursing through the Children's Waiver Program, which provides Medicaid to Cory even though his parents don't qualify. Their income is too high.

Chris Wiltse is a sales manager for an automotive recycling company near Lansing and Tani Wiltse works part-time as a medical referral specialist.

"If that person does not need that care, then we cannot pay for nurses that that individual person does not need," said Sheri Falvay, director of the department's Mental Health Services to Children and Families.

Private-duty nursing is the most expensive offered, she said, adding Cory was "on the cusp all along" of qualifying.

"No one is denying that Cory needs services and he can get it through an aide," Falvay said.
The state plans to replace his registered nurse with a community-living support aide after June 28.
Angila McEwen is a licensed practical nurse and pediatric care coordinator for Lakeshore Home Health Care Services Inc. Battle Creek, which provides nursing care for Cory. McEwan said she has been searching for an aide qualified to care for Cory, but has not found one yet.

Lakeshore would train an aide for Cory's complicated needs. He takes 1,035 pills a month, mostly anticonvulsants, that must be crushed and given by oral syringe. He has been diagnosed with seizure disorder, cerebral palsy, mental retardation, rickets, hypothyroidism and autism.

"He needs a lot of supervision. He has behavioral issues," McEwen said. "I think it'll be very hard to find someone who would work at that wage."

On average, a community living support aide is paid $9 per hour through Lakeshore Home Health Care Services, McEwen said. A registered nurse is paid $21 per hour.

There is no minimum medical education required to be an aide. A registered nurse has at least an associate's degree in nursing.

Summit Pointe, Calhoun County's community mental health agency, backed the Wiltses while they appealed the ruling at an administrative hearing on Feb. 1 in Battle Creek.

In Michigan in 2006, there were three requests for hearings involving private-duty nursing, Falvay said. Of those, one was withdrawn, and the department's decision was upheld in the other two.
The administrative law judge upheld the state's decision to replace Cory's nurse with an aide, and the Wiltses are unsure if it's worth the money and stress to take the matter to court.

"Once the state rules, it rules," Chris Wiltse said. "From the legal opinions that I could get, it was throwing good money against the bad."

Tani Wiltse said she would quit her job to stay home with Cory and make sure he got the care he needed.

"Cory comes first," she said. "Nothing ever comes before your children."

Such a sad story. But, Cory's parents are so loving and giving him the proper care he needs. Vaccines are so important keep from getting debilitating or deadly diseases, his situation is so rare. I know a few people who don't get their children vaccinated for this reason. But in truth, the advantages way outweigh the risks. Thank you, Mr. and Mrs. Wiltse, for being role model parents for Cory. You're both great.

Vaccine facts

Pertussis, also called whooping cough, can make eating, drinking and breathing difficult for infants for many weeks. It can lead to pneumonia, seizures, brain damage or death.

One dose of DTaP vaccine for diphtheria, tetanus and pertussis should be given five times at 2 months; 4 months; 6 months; 15 to 18 months; and 4 to 6 years.

Immunization is required for school entry in Michigan, but can be waived with signed parental permission. Children without pertussis immunization may be not be allowed to come to school if an outbreak occured.

DTaP is a safer version of the older vaccine called DTP, which is no longer used in the United States.

The pertussis vaccine in DTaP is only licensed for children younger than 7.

Reactions to the vaccine:

About 1 in 4 children will have a mild reaction, such as a fever or redness and soreness where the shot was given. It most often occurs after the fourth or fifth dose.

One in every 1,000 children will have nonstop crying for three hours or more. One in 14,000 will have seizures. One in 16,000 will have a fever more than 105 degrees.

Less than 1 in 1 million children will have serious allergic reactions, including long-term seizures, coma, lowered consciousness or permanent brain damage.

What to do for a severe reaction:

Get the person to a doctor immediately.

Tell the doctor when the vaccination was given and when the reaction occurred.
File a Vaccine Adverse Event Reporting System form with your physician, nurse or health department, or call 800-822-7967.

Ask about the National Vaccine Injury Compensation Program for children who have had serious reactions by calling 800-338-2382 or go to www.hrsa.gov/vaccinecompensation.Sources: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Immunization Program, Vaccine Information Statement, DTaP.

Surgery could give a seizure free life to toddler

The 16-month-old from Brisbane came to the Royal Children's Hospital so doctors could put a stop to the seizures she was suffering every day.
In a nine-hour operation, neurosurgeons removed tiny sections of Chelsea's brain that were causing the seizures.
To look at her now, the courageous tot is a picture of cherubic good health.

"It's as if a fog has lifted," Mr Shields said. "The results have been unbelievable."

Chelsea has not suffered a single seizure since the operation two weeks ago and, best of all, the brave little girl is ready to go home.

"We're so happy and relieved, and we feel that Chelsea's future is looking a lot brighter," Ms Shields said.

Last year, Chelsea was diagnosed with a rare form of epilepsy called tuberous sclerosis.
The condition is so rare that it affects just one in 6000 people.

Queensland neurologists told Chelsea's parents that brain surgery could cure the rare defect, but it carried some risk. The tubers in Chelsea's brain that needed to be removed were located next to crucial parts of the brain controlling her speech and motor skills.

One slip of the scalpel and Chelsea could have been brain-damaged for life.

"We keep saying to each other: 'Is this real?'," Mr Shields said.

Great moment in teenager's life who battles Epilepsy and Autism

This week was special for 14-year-old Matthew Bond because for the first time ever a friend came to his house, hung out with him and watched videos.For most kids, this would be no big deal. But for Matthew, who has autism, the visit was one of the most important events to happen in his life so far.Most autistic children find it difficult to reach out to other youngsters — and the world in general.

On Thursday, Matthew’s parents, Brian and Kim Bond of Bradford, spoke about their oldest son’s condition in conjunction with Autism Awareness Month, which is observed in April. The Bonds also hope that by sharing their story, others will become more aware of varying degrees of autism, how it affects children and the help that is available.A visit to the Bond household this week found Matthew’s parents, his brother Craig and sister Mikayla excited for Matthew.

That’s because running around the house with him was his buddy from school, Kyle Robinson.Mr. Bond said he learned of Matthew’s new friend when his wife called him at work Wednesday night. “Kim called me and asked if Kyle could spend the night with Matthew and I said, ‘Yeah, go ahead, he can stay’ and hung up the phone,” Mr. Bond said.“But then I thought about it a minute, called her back and said, ‘Did you just say what I thought you said?’ Nobody has ever had the guts to say ‘Matthew’s my friend and I don’t care what you think.’”

For the Bonds, events such as this are the small steps their son has been taking towards living a full life.Mrs. Bond said that as a baby, Matthew appeared to be developing normally until the age of 3. It was then that his parents noticed he wasn’t speaking like other toddlers his age. When he developed multiple seizures his parents knew that something was wrong. “We went to a neurologist and he told us, ‘We’ll get the seizures under control and you’ll have a normal child,’” Mrs. Bond said.However, when he started school, Matthew stayed to himself and played with blades of grass while other children ran around and interacted in the playground.

Mrs. Bond, who works with autistic children at Beacon Light Behavioral Light Health Systems, said that she had suspected that her son could have the same developmental disability.But it was only after visiting neurologists at Children’s Hospital in Pittsburgh for several years that specialists finally determined Matthew had autism. He was 8 at the time and his parents knew they had a lot to do.One of the first steps was for Matthew to have a vagal nerve stimulator implanted to help control his seizures. The stimulator, described as a pacemaker for the brain, only was implanted after the Bonds battled an insurance company to fund the procedure.

The operation was scheduled to take place until the insurance company backed out at the last minute. In response, the Bonds contacted the media and publicized their plight. Within days the insurance company changed its position and agreed to pay for the procedure.The incident inspired the Bonds to become more vocal about autism, set up a Web site and start an Autism Support Group in Bradford. The group meets at 6 p.m. the first Tuesday of each month at the First United Methodist Church and has a good following.

The family also participated in an autism awareness walk last year out of the area, and they are forming a team this year called the “Bradford, Pa., Walk for Autism.” The group will walk in an autism awareness walk in Jamestown, N.Y., on Sept. 16. “With Matthew, we started a little late but we’ve made a lot of progress,” Mr. Bond said. While Matthew has therapeutic staff support at Floyd C. Fretz Middle School, he also works on computers in technical education classes and is enrolled in general gymnasium classes where he is encountering new friends like Kyle.The parents noted that one family member who has helped Matthew come out of his shell is the family dog, Brandy.

Adopted from the McKean County SPCA, Brandy has been a best friend to Matthew over the years.The Bonds said they hope to continue to get the word out on autism as they believe it is reaching epidemic proportions. According to statistics provided by the Centers for Disease Control, autism is now affecting one out of every 166 children and strikes more boys than girls.Mr. Bond said that thanks to research, autism is being detected earlier in children, thereby providing earlier intervention.“We were given Matthew for a reason, and if it’s us talking about it and making other parents realize they’re not alone,” she said, that’s what the family is prepared to do.

Epileptic fights the American Health Care system

Here's a story with a happy ending. It's about American health care at its best as well as its most aggravating.

More specifically, it's about Sonya Hearn of West Islip, a bright and bubbly homemaker who has lived for most of her 42 years haunted and tortured by the curse of epilepsy. But since July 18, when she had surgery to remove a portion of the right side of her brain the size of a man's thumb, she has been free of seizures for the first time since she was 8 years old."Words can't fully describe what that is like for me," she wrote in an e-mail.

"I have been given a life that I never knew I could enjoy. My seizures really destroyed my quality of life, which, in turn, affected my girls' life. Forget the days where I would have more than one, sometimes four or five."Hearn and her husband, Dean, who works as a technician for a marina in Bay Shore, have two daughters, Dana Lyn, 12, and Amber Lee, 8. They are an average American family, but they personify what millions of families face when there is serious, expensive, life-threatening illness, even if they have health insurance.

They may be obliged to fight the insurance establishment for the best care to regain their health or to stay alive while avoiding economic ruin.Hearn doesn't really know where her epilepsy came from. She was physically abused as a child, which she thinks may have contributed to it. She also learned that her forebears four generations back on her mother's side suffered seizures. The literature says epilepsy, which affects more than3 million Americans, is often inherited. With modern drugs, seizures can be minimized and partially controlled, as they were in Hearn's case for some years.

Nevertheless, she drove in the right-hand lane to be able to pull over to the curb, if need be. And she had to be careful in the house around the kids, who were frightened at first but came to know what to do when their mother had a seizure.Eventually, as Hearn wrote, she "went through all the medications only to discover that none completely controlled my seizures," which came more and more frequently - several times a month, then several times a week, then several times a day.In 2005, her neurologist, Dr. Mark Gudesblatt, of South Shore Neurologic Associates in Bay Shore, concluded the only course left was surgery, the removal of that part of the brain that was causing the seizures.

But first she needed a series of sophisticated and expensive tests to pinpoint the problem. And she and Gudesblatt believed the only neurologist at Columbia Presbyterian Hospital qualified to administer the tests was Dr. Lawrence J. Hirsch, a specialist in the Comprehensive Epilepsy Center, the only such facility in New York.But Hearn's HMO, Group Health Inc. (GHI), notified her and Gudesblatt that while Columbia was part of its network, Hirsch was not. The insurer said it would not cover the test unless she found a qualified neurologist within the network. But there weren't any, Hearn said, and Hirsch was the only doctor she and Gudesblatt trusted.

In January 2006, Gudesblatt, who had read a "Gray Matters" column on problems with insurance companies, e-mailed me Hearn's story with her permission, suggesting I might write a column about her dilemma. So I sought a comment from a GHI senior executive, explaining Hearn's problem. Surely, I suggested, GHI could show some flexibility. The executive promised to "look into it" and from then on GHI was more responsive to Hearn and her doctors, but continued to nitpick.The company's officials had repeated questions, as well as suggestions for alternative treatments and different doctors.

But Hearn, along with Gudesblatt's knowledgeable office personnel - Anne Dunn, a registered nurse, and Carol Seidel, who specializes in dealing with insurance issues - parried the questions and objections. At one point, when another test was needed, GHI questioned whether other health conditions might be contributing to Hearn's seizures, or whether she needed stress therapy, and how she was handling her seizures with her children. Gudesblatt wrote me that it is "amazing that I have to beg for authorization, but I do."The final hurdle was to get the doctor whom Hearn and Gudesblatt thought was the best neurosurgeon, Columbia Presbyterian's Dr. Robert R. Goodman, who specializes in such operations but is not in GHI's network.

By this time, Hearn wrote, her seizures were frequent and she waited impatientlyTo its credit and at some cost, GHI ended up footing most of the expense of the tests and two brain operations - perhaps as much as $1 million, said Hearn. She credits her doctors and her own persistence for convincing GHI to do the right thing. A GHI spokeswoman declined a request for comment.While HMOs may insist that patients use providers with whom they have contracts, they are obliged by law to pay for providers outside the network if there is no safe alternative and it is medically necessary.

Readers having similar problems should let me know.Hearn quipped that she now boasts of a "million-dollar brain," adding, "if it's any consolation to GHI, I am seizure free ... the money spent hasn't been for naught." The bills are still coming and she still suffers from mood swings that are among the aftereffects of the surgery, and she and her husband owe several thousand dollars to the hospital, a debt they are slowly paying off.

Stress, seizures and premature birth!

Expectant mothers who experience a high level of stress and have little support are at greater risk of giving birth early.

That is according to a new study.

Researchers at the University of Colorado found stress increases certain proteins in a pregnant woman's body, which can contribute to preeclampsia and preterm labor.

Preeclampsia causes high blood pressure, headaches and affects the mother's kidney, liver and brain function.

If not treated, the mother could have seizures or even fall into a coma.

Premature infants can suffer from health problems due to a underdeveloped nervous system and lungs.

Veterans and seizures

In addition to the trauma of losing limbs and internal injuries, wounded Iraqi veterans are finding they can't remember simple things, function slower at simple tasks, have seizures and have a generalized feeling of fogginess. Brain injury from explosions is the cause of these symptoms.In late March veterans and their families lobbied on Capitol Hill for more help with this new type of war wound.

Legislation would require more access to mental health facilities through the Defense Department and the VA, better training of family members and comprehensive monitoring of all returning troops for signs of brain trauma.

Mild cases of brain trauma do not surface immediately. Dr. Katerine Henry, director of neurology for the New York University School of Medicine points out that there is a rise in returning troops who have seizures, cannot control thoughts, memories and emotions. Landstuhl Regional Medical Center in Germany started a brain screening program finding one third of its war-related patients have some mental impairment.

New medication could be controlling seizures more effectively!

The new drug called Eslicarbazepine (ESL), offers the patients added convenience, as it is a once-daily dose, while current treatments can involve several doses per day. The research was conducted by the Department of Research and Development at BIAL in Portugal.As a part of the study, researchers conducted trials across 19 locations in five European countries: Croatia, The Czech Republic, Germany, Lithuania and Poland, in which patients with at least four partial-onset seizures per month, in spite of treatment with other medications, were administered ESL doses ranging between 400mg and 1,200mg.

Researchers found that ESL was well tolerated and effective when used as adjunct therapy for adult patients with partial epilepsy, fully eliminating seizures in 24 percent of tested patients. The occurrence of side effects was also low when compared to other current treatment methods.No age- or gender-related differences were found in the effectiveness of the treatment. "Our study shows that ESL was safe and well tolerated.

We believe that ESL may have the potential to become an important new central nervous system drug not only for the treatment of epilepsy, but also for patients suffering from bipolar disorder and neuropathic pain," Patrmcio Soares-da-Silva, co-author of the study said.The findings of the research were published in the latest issue of Epilepsia.

Epilepsy vs. crashes: Not easy to prove!

On a fall day more than 16 years ago, Terry L. Thomas' car crossed the centerline on Kenny Road and crashed into a line of stopped traffic.

A noted Ohio State University cancer specialist, Dr. John P. Minton, died in the crash, which was later linked to an epileptic seizure suffered by Thomas.

Last week, Thomas, 59, of 3093 Wareham Rd. in Upper Arlington, was involved in a similar crash on Worthington-Galena Road. Early on March 27, his car crossed the centerline and shot into a stand of trees.

This time, he lost his own life.

It might never be known whether the epilepsy cited in the crash that killed Minton played a role in Thomas' own death.

Investigators suspect the medical condition was involved, but Franklin County Coroner Brad Lewis said no forensic evidence would prove it.

"That is a very hard thing to pick out," he said.

Dr. J. Layne Moore, an associate professor of clinical neurology who runs Ohio State University's comprehensive epilepsy program, said the only physical evidence of seizures typically is incontinence or tongue-biting. Either of those conditions also could occur in a fatal car crash.
"Unless you've got a witness to the seizure, I wouldn't think you can tell anything from the body," he said.

Thomas was charged with vehicular homicide in Minton's death and pleaded guilty in 1991 to a lesser charge. A judge sentenced him to community service and banned him from driving until he was medically cleared.

Epilepsy isn't a disease but a neurological condition in which electrical imbalances in the brain can trigger seizures. Though surgery sometimes can halt the seizures, a cure doesn't exist for most patients. But experts say that, when properly medicated and treated, people with epilepsy can live normal, productive lives that include safe driving.

In Ohio, people applying for a driver's license must say whether they have a condition that would impair their driving. If they do, they must submit a medical statement showing that they are fit to drive. If they aren't, the Bureau of Motor Vehicles may restrict their driving or suspend privileges entirely. Their status is reviewed periodically.

Bureau records show that, when he died, Thomas had a valid license. The only listed restriction was corrective lenses. The status of his epilepsy and any treatment he may have been receiving is unclear. Messages left for relatives at his home were not returned, and the state does not release personal medical information.

Thomas' driving record shows two convictions for failure to control a vehicle, in 2003 and 2005, and one for failure to maintain assured clear distance in 1998. Two of those cases involved accidents.

Moore, who did not treat Thomas, said Ohio does not have a law requiring doctors to inform the state about a patient who has epilepsy. He said the key is to build enough trust with patients to make them realize when they shouldn't drive.

"I tell them that they're not allowed to drive, that they might hurt themselves or hurt other people," he said. "I tell them that I want them to live until they're 80, to resent me."

Moore said most doctors agree that a person who hasn't had a seizure in six months is safe to drive. In a study published in 2004, Maryland researchers found that during one two-year stretch, 0.2 percent of U.S. traffic fatalities involved seizures.

An epileptic driver involved in an accident "may have misrepresented that he had seizures, he may have thought he wasn't having any, or he may have been noncompliant and he may have skipped doses," Moore said.

"They generally do really well, if they're well-controlled," he said.

Could Mother Nature offer some of her gifts to control seizures?

EPILEPSY has been known for ages. Most people associated it with someone who falls down on the ground, shakes, jerks, perhaps even foams at the month, and then comes round feeling quite dazed and tired.

There is also a host of misperceptions about the condition, including the belief that it is a “mental illness,” that it is contagious, that people having seizures can become violent and dangerous, and even that it is a “curse” inflicted on the evil.

None of these ideas is in any way true, but the stigma attached to epilepsy is curiously resistant to change, possibly because the sight of someone having a seizure can be frightening to those who do not understand that is happening.

Epilepsy is a complex condition and manifests in a variety of ways. Simply, it is caused by an imbalance between different electrical signals (called neurotransmitters) in the brain, and this creates an abnormal discharge of electrochemical activity in the brain.

Though the causes may include brain infection, stroke, and even birth trauma and rarely, genetic disorders, the good news is that even in traditional medicine, several herbs can be used to reduce the frequency of seizures associated to epilepsy, even if the situation cannot be cure.

Many of these herbs, scientists have also worked on to ascertain if there is any iota of truth in their effectiveness the treatment of epilepsy as it is the practice with traditional doctors. The water decoction of the secondary root of Harpagophytum procumbens (Devil’s claw) is one of such that researchers had tried out in mice. Reporting in March 2006 issue of the journal , Brain Research Bull., Drs. Mohamed I.M and Oyewole J.A, they said it did not only suppress the seizures, but that in general, the average onset of convulsion was delayed.

Because the plant’s extract also depressed the central nervous system, they concluded that given its ability to prevent convulsion, their study lends pharmacological support to the suggested folkloric, ethnomedical uses of the plant in the treatment, management and/or control of epilepsy and childhood convulsions in some rural communities of South Africa.

Similarly, the team from Department of Animal Biology, University of Dschang Cameroun that worked on the leaves of Kalanchoe Crenata (Andrews), an herbaceous plant used in the African against otitis, headache, convulsions and general debility, found that the extract of the plant protected 20 per cent of the experimental animals against death in seizures-induced conditions in these animals.

Avocado leaf is no exception either according to finds of Dr. J.A. Ojewole of the Department of Pharmacology, School of Pharmacy and Pharmacology, University of KwaZulu – Natal Durban, South Africa. Data obtained when the water extract of the avocado leaf was administered to mice indicated it possesses an anticonvulsant property, and thus lending credence to the suggested ethnomedical uses of the plant in the management of childhood convulsions and epilepsy.
The researchers suggested that avocado leaf water extract produced its anticonvulsant effects by enhancing neurotransmission and/or action in the brain.

Tetrapleura tetraptera fruit (locally known as Aridan) is widely used in African traditional medicines for the management and/or control of an array of human ailments, including schistosomiasis, asthma, hypertension, epilepsy and so on.

Investigating its effectiveness in mice, Dr. Ojewole, found the water extract of this fruit possesses pain relieving and anticonvulsant properties, so lending support to the suggested folkloric uses of the plant’s fruit in the management and/or control of pain due to arthritis as well as for the management and/or control of epilepsy and childhood convulsions in some tropical African countries.

A trial on Cyperus articulatus (Guinea Rush) in the Journal of Ethnopharmcology also found that the rhizome possesses anticonvulsant properties in animals, so given some credibility to its use as a traditional medicine for epilepsy in Africa similar to the decoction of Mimosa pudica (sensitive plant or touch- me -not leaves).

When the water extract of Leonotis Leonurus (Lion’s tail or Wild Dagga) was tested for anticonvulsant activity against seizures, in the journal Phytomedicine, the data the researchers came up with suggested it has anticonvulsant activity, explaining that it may be helping to reduce incidences of seizure by acting through non-specific mechanisms.

Another group of researchers at Department of Pharmacology, Lagos State University College of Medicine also confirmed that water extract of Bryoplyllum punatum (miracle plant or tree of life) may be helpful with controlling seizures that are related to epilepsy.

Extracting the leaves with salt and water to ascertain claims of its local use in epilepsy, Drs. Kayode Yemitan and his co-researchers tested it in mice and found it produced a dose dependent prolongation of the onset and duration of hypnosis, reduction of exploratory activities in the mice as well as confer a minimal protection against seizure.

Fruits like apples, figs and grapes have proved beneficial in the treatment of epilepsy too. Taking about 500ml of the juice thrice a day for three months can be helpful.

Seizures free, he now enjoys life to the fullest!

James Huffman's body has never been his own.

Decades ago, a portion of his brain surrendered to the evils of epilepsy. The culprit: an unexplained clump of cells on the left side of his brain.

James, 44, endured countless seizures. An indescribable feeling he called "the aura" often came before a seizure. Seconds later, he grabbed his head. Fell. Spun around. Lost control.

It happened at home with his sons Matthew, 7, and Nathan, 2. At Wal-Mart, where he worked. Even while driving.

Then, he had brain mapping surgery last July.

He hasn't had a seizure in eight months.

Even so, an uncertainty remains.

* * *

James' first seizure was in 1973, at an aunt's house in Michigan.

His family watched the boy spin around in the kitchen, his eyes rolling into the back of his head as he convulsed on the floor. At first, his mother thought he was joking around. Then she called 911.
Doctors were unsure what was wrong.

Without a diagnosis, James got used to years of explaining that sometimes, his body worked independently from his mind.

Friends and family grew accustomed to the precursor to James' seizures: he would grab his head with his left hand. Then, he would spin around, knocking things over. They learned not to hold him down.
If he was outdoors, they protected his head, shaded him from the sun.

His body showed no mercy. It didn't matter where he was.

About 8 a.m. March 24, 2005, while driving home from work on U.S. 19, James had a seizure.
His blue Mitsubishi Eclipse spun counterclockwise and crossed eight lanes of traffic. Miraculously, no one was hurt.

A few months later, James had 40 seizures in a single day. Doctors said he had a stroke. But an MRI by James' neurologist found something odd: a cluster of nerve cells in his brain that shouldn't be there.

There had been no stroke. Epilepsy caused the scores of seizures.

Hope came in the form of brain mapping, a process in which doctors use a grid to locate the bad cell clump, cut open his head and remove it.

After a 12-day stay at Bayfront last July, James emerged a new man.

Doctors had removed 85 percent of the bad cell clump. But there was a portion they couldn't reach.
"About 15 percent is still there," said Erasmo Passaro, a neurologist at Bayfront Medical Center in St. Petersburg. "We have to wait and see how he does. ... Once he goes two years, that's a sign he will continue to remain seizure-free."

James was antsy during his eight-week recuperation period. He wondered if the surgery worked. And he longed to do something other than watch TV and sleep. He wanted to mow the lawn, go to work.

"I didn't like not being able to get up and do things," he said. "I had to pay a guy to mow the lawn."
James paused, swelling with pride.

"I've never done that."

* * *

Each day without a seizure is a triumph for James, but he wonders what the next day will bring.
"I haven't gone this long without a seizure since I was 11," he said. "It's like you keep waiting for the other shoe to fall, but it's not going to."

Any minute, his wife, Jennifer, expects him to call and say he had a seizure and needs a ride home. His actions inadvertently make her nervous.

"It's weird not watching him every second," she said. "One time, he was staring this blank stare. I said, 'Are you okay?' It's weird not having to plan everything around how he's doing."

James' mother, Dana, recently moved from Michigan to Hudson to be closer to her son. She drives him to work in his blue car. On a calendar in her apartment, she keeps track of the weeks since his last seizure. So far, it's been 35.

"We still have that in the back of our minds," Dana said. "It's like sometimes, if he does a certain movement, your heart skips. This morning, taking him to work, his eyes itched, so the hands go to the eyes. ... There's just this fear."

* * *

As a precaution, James sees a doctor every few months. He takes three medications daily.
More than anything, James wants to drive his car. But his license was medically suspended after the car accident. He won't get it back until July, one year after his surgery.

"I don't like to look at it the car," he said. "I'm too tempted to take it around the block."

For James, every second counts. Another seizure could be around the corner. He braces himself, hoping to leave his old life behind.

"I'm glad I'm not going through this anymore," he said. "It would be hard to go through all this and then have one."

He's also gotten used to answering the same question over and over again from his co-workers:
"Have you had one yet?' "

Four years old boy suffering from beating, then seizures

Homicide detectives are building the case against an Indianapolis mother and her boyfriend. They face charges in the death of her four-year-old son. Christopher Montgomery and Courtney Simpson are scheduled to have an initial hearing Tuesday at 8:30 am.

Police say Courtney Simpson stood by and watched as her boyfriend beat her four-year-old son to death inside an east side motel room Friday.

Montgomery was arrested on murder charges and Simpson was arrested on A felony neglect of a dependent charges after the death of Simpson's four-year-old son Elijah. The prosecutor's office has filed a 72-hour motion. No formal charges have been filed. Prosecutors are meeting with the detectives assigned to the case and reviewing evidence.

Doctors say Elijah Simpson was already dead upon arrival from a skull fracture Friday. Metro homicide detectives found restraint marks on Elijah's wrists and ankles. Detective Markus Kennedy says Simpson eventually admitted her boyfriend hog-tied Elijah for sucking his thumb.
Simpson now says she's sorry and says her son wasn't the only victim.

Indianapolis Metro Police say Simpson watched Montgomery pick up and threw Elijah to floor. The little boy suffered a fractured skull, went into seizures and later died.

"I'm guilty of not getting them out of the situation quick enough. (I) should have left years ago," said Simpson.

Courtney Simpson spoke with Eyewitness News Sunday evening at the Marion County Jail where she is being held on a $100,000 bond.

Her four-year-old son, Elijah, died Friday of a skull fracture. Police say the fatal injury was delivered by Simpson's boyfriend, Christopher Montgomery.

The situation Simpson and her two children found themselves in, according to her, was one of violence, fear and intimidation at the hands of Montgomery.

But she adds, "Don't have pity for me because I'm just as guilty as he is, because I didn't leave. But understand I was scared. And if you are in a situation like that, I ask you to leave right now, I mean right now, because it could be you sittin' here or your child there or vice versa and your kids don't have anybody and your family left with unanswered questions."

The morning Elijah died, Simpson says her boyfriend was upset with the little boy for faking sleep and sucking his thumb. At four in the morning he had Elijah stand in the corner.

"He told him to come here and he was movin' slow," said Simpson. "So he got out of bed and picked him up and threw him down."

Elijah landed on his head and started having seizures.

"I picked him up and asked Chris to let me take him to the hospital," said Simpson. "I said 'I need to take him to the hospital.' He said 'I don't know how you gonna get there.' And he said, 'Now you in a Catch 22 because if you call the ambulance or the police over here, you gonna be dead before they get there.' And he was gonna hurt my family."

The fear and intimidation she says kept her from getting her children out also kept her from getting the help Elijah needed.

She continued, "But when you love somebody and you believe them and think they gonna change."

Now her youngest son is dead, and Simpson is charged with felony neglect of that son.

As the interview ended, she said, "There's not enough love in the world , because it ain't supposed to hurt."

Carlene Richardson at the Julian Center Shelter wishes Courtney Simpson had called for help. "She has to want safety enough that she says I am going to take a chance and get out of here," Richardson said. "We have emergency numbers to call." (What to do in a domestic violence situation.)

Family deals with child's seizures disorder

During the long stretch of nights when Charlie Weis was afraid to go to sleep for fear that he would never wake up, there came a promise.He would make a difference with his second chance at life.Months later, in the light of day, when the reality of nearly dying during gastric bypass surgery was diluted by heavy doses of normalcy, the promise remained.

Unbroken. Unabashed. Untouched by the fact that fear was no longer leveraging humility.Eventually the promise became a dream and then a movement. Today the miracle isn't that the Notre Dame head football coach co-created the Hannah & Friends charity with wife Maura four years ago, it's that somehow the cause never got stale, the momentum never arrested. In fact, it rolls on with more money, more reach, more ambition than ever before.Hannah & Friends, inspired by the Weises' almost 12-year-old special-needs daughter, Hannah, is a nonprofit foundation dedicated to providing a better quality of life for children and adults with special needs.

The mission is that simple, though the challenges and solutions aren't always.On April 17, Charlie Weis will talk about his experiences, serving as the keynote speaker at the 18th annual Human Rights Awareness Day luncheon. The event, sponsored by the South Bend Human Rights Commission, will be held at Century Center.Maura Weis will be honored at the luncheon for her work with Hannah & Friends. A free Fair Housing Workshop will be held at Century Center as part of the day's festivities, before the luncheon."I have put a lot of myself into my coaching over the years, and I think of myself as a dedicated family man, too," Charlie Weis said.

"But there was always something missing. And that was giving back and making a difference. Hannah & Friends completes me." The long-term plan of Hannah & Friends is a 30-acre farm to be built in the Michiana area, with 16 group homes to house adults with special needs."Everybody talks about the explosion of autism and the explosion of global developmental delays," Maura Weis said, "but I don't think a lot of people are thinking about 'Hey, where's this population going to go when they're 21 years old?'"What if the cure for autism is 100 years from now? What if the people who are living with it now -- don't they deserve a life with friends and a place to call their own also?"

I think people are really forgetting that aspect. So, hopefully, we're fulfilling a need, in this area anyway. And, hopefully, because of Charlie's national attention, he can maybe spur other people to build communities like this."The short-term plan focuses on small grants that help families with special needs, with things like respite care and computers and making a family bathroom handicap-accessible. Yet in every moment of every day, it's about awareness.

"I think the problem for people with special needs of all ages often comes from not being treated like people," Charlie Weis said. "They're treated like they're freaks, like it's a freak show. And regardless of disability, whether it be mental or physical, anywhere from kids to adults, they all know they're different."One of the things they appreciate the most is when you treat them normal, when you don't treat them like they're a sideshow. Even my daughter, who has severe disabilities and who can say maybe 50 words, four of the words you hear her say are 'I'm sorry' and 'so sad.'"

So very seldom can she express her feelings like that verbally, but 'I'm sorry' and 'so sad' come out. And a lot of times we believe that her 'so sad' is because she knows that she's different."I think that being the head coach at Notre Dame, following up from being the offensive coordinator with the (New England) Patriots, has given me a public forum to bring that awareness and compassion to people with special needs."

And it's a public forum without fanfare. There is one paid employee in the entire Hannah & Friends operation -- Notre Dame graduate Sharon Bui, formerly a fourth-grade teacher at Stanley Clark School in South Bend. The rest are volunteers and the Weis family, which includes 13-year-old son Charlie Jr. The "headquarters" is the family basement."I think one of our successes is being a mom-and-pop operation," Bui said. "We've been able to keep our administrative costs low and keep a focus on our mission."Charlie Weis is the face of the movement. Hannah, a child incorrectly diagnosed in the womb with the fatal polycystic kidney disease, is the inspiration. Maura is the muscle.

Even back when she was in high school, Maura Weis felt compassion for the special-needs kids -- their structured isolation in the classroom, their unstructured isolation in the lunch room.Those memories faded, but the compassion didn't. And it was reawakened almost a decade ago. Hannah's global delays didn't show up until around age 2 1/2. And Maura Weis immediately immersed herself into finding the answers, the causes for the delays. The original diagnosis was autism/pervasive developmental disorder. In the process, Maura Weis still had to keep the household going while her husband was working 90-plus-hour weeks as an NFL assistant football coach.

Many of Maura's friends scattered, treating her daughter as if global delays might be contagious. The same kind of thinking led family members, for the most part, to distance themselves.Suddenly Maura, the woman whose heart bled years ago for the isolated kids in the cafeteria, was isolated herself. Yet she kept pushing forward.When Charlie Weis was the offensive coordinator of the New England Patriots in his last job, Maura used to pass a decrepit building in Providence, R.I., on her drives from the family home in Rhode Island to Gillette Stadium in Foxboro, Mass."It's a creepy, defunct kind of asylum," family friend Brenda Cryan said.

"It's completely abandoned now. I asked Maura one time what the building was, and she told me this is where children like Hannah were put in the '50s and '60s. They didn't live with their families or go to restaurants or walk around in the malls back then."Maura knew it could happen to anybody. She needed to raise awareness. She needed to help more than Hannah." And so this sweet, petite woman started barking at doctors when they shrugged their shoulders. She sought second opinions. She wore out Google, searching.

As it turns out, what the family had suspected for almost a decade as the cause of the global delays -- the measles, mumps and rubella vaccine -- wasn't the cause at all."Hannah, now we've found, has a seizure disorder, and maybe seizures are what caused her all her global delays," Charlie Weis said. "Well then, the issue is, what caused the seizures?"So, I mean, it's a never-ending saga, because each situation is unique. Each person is unique."But the stress on families is universal. And that, in large part, is why Maura Weis is in the process of writing a book. The yet-untitled work is aimed at parents of special-needs children and is due for release in 2008.

"The divorce rate for people with kids with special needs is over 80 percent," Charlie Weis said. "You could see why, because of the extra anxiety in a house when you have a kid with special needs. It's not normal. You make it normal. It's normal for us now. But when you're younger and you're going through this stuff, you're always working to try to find ways to make your kid's life better. You're always doing that. Every day."There isn't a day that goes by that Maura isn't online or reading up on something, whether we're going to another doctor's appointment -- we're always being progressive to try to make Hannah's life as good as it possibly can."And Maura, in turn, makes sure that the answers, makes sure that the hope isn't isolated.

"She could have kept that information (about the seizures) to herself," Bui said, "but she wanted to get it up on our Web site (hannahandfriends.org) right away, so that other parents might see it. And she does things like that every day."We get hundreds of e-mails to our Hannah & Friends account, and they could just sit there. But Maura answers every one. She builds relationships with families. "The answers are all individual, but the message is the same: Thanks for leaving no stone unturned. Thanks for not giving up on your child."