Arlington Hts. family, teachers help boy recover from rare brain ailment

Sam Benson was 9 years old when he suffered his first grand mal seizure.

It dropped him to his living room floor and knocked a video game controller from his hand.

It was Colette Benson's first sign something was seriously wrong with her only child.

Sam would suffer seizures for months, sometimes more than one a day. During the worst times, seizures struck every half-hour or so. Between July 2007 to January 2008, Sam lived at three different hospitals, while doctors tried to figure out what was wrong.

"I had no idea what was going on," Colette said. "At first, I thought the video games had something to do with it."

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After the first seizure, Collette and Sam's dad, Chuck, rushed their son to the hospital, only to see Sam's suffering continue while doctors tried to figure out what was wrong.

"He was having three or four seizures an hour," said Collette.

Pretty soon he couldn't use the right side of his body. His face started to droop and Colette said her son spoke gibberish, talking in some kind of "all-vowel" language.

In August 2007, they met Dr. Mark Wainwright at Children's Memorial Hospital in Chicago. At the time, Sam couldn't speak or move the right side of his body. He'd lost so much weight, his shoulder and collar bones were visible through his hospital gown.

The doctor moved Sam to intensive care.

"When you see a perfectly healthy child's well being decline so quickly, one of the first things that comes to mind is an autoimmune infection," Wainwright said.

After a medically induced coma and a brain biopsy, Wainwright and other doctors diagnosed Sam with glutamic-acid decarboxylase syndrome - which basically means an antibody in Sam's brain was attacking healthy cells.

"We don't know what makes this happen or what exactly triggered the attacks," Wainwright said.

Sam's team of doctors went about the business of trying to cure him.

The remedy was painful and is still ongoing. Doctors needed to get rid of the bad antibodies while not causing more harm to Sam's frail body. At one point, he spent 80 straight days in a hospital bed without seeing sunlight.

Sam was given a whole host of medications including steroids. He underwent plasmapheresis, where all of Sam's blood was removed from his body, filtered and then replaced.

Colette and Chuck did their best to keep Sam comfortable. His bed was flooded with stuffed animals and pictures of his parents lined the wall behind his bed.

They hung a note near Sam's bed that read "Don't talk about Sam in front of Sam" to prevent all the medical jargon from frightening their son.

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After rehabilitation, Sam returned home in January 2008.

Colette, who is a mail carrier, and Chuck, who works for the Arlington Heights public works department, barely recognized their son.

He couldn't feed himself and became very frustrated, screaming at his parents and throwing items around the family room.

"It was so hard because he couldn't tell us what he wanted," Chuck said. "He'd run into the street and have tantrums. In some ways, it was like we brought home a 3-year-old."

"We had to childproof our home again," Colette added.

Enter Nancy Abruscato, Christie Brennan and Melba Gustafson - all teachers at Westgate Elementary School in Arlington Heights. Abruscato was Sam's kindergarten teacher and remembered the funny, blond-haired kid she had taught to read.

In February 2008, Sam was older, but intellectually, he was back in kindergarten.

"There were outbursts and it was hard at first, but we knew Sam and, in a lot of ways, he's like one of our own kids," said Abruscato, who along with Brennan and Gustafson stopped by Sam's house after school and on the weekends to work with him.

They started at the beginning, teaching Sam how to hold a pencil and how to listen.

He's still catching up.

"I'd say Sam is at about the third- or fourth-grade level now," Abruscato said. "But he's the old Sam I remember. He's back to being the happy little guy I remember. You just have to keep working and that means taking 10 steps forward and maybe five steps back."

Sam repeated the fifth grade last year. But thanks to his Westgate team, he's headed off to South Middle School next year. He's thin and lanky and running to catch up to his 11-year-old peers, they said.

His parents are watching his maturity level. Sometimes, Sam hugs people he doesn't know or interrupts other conversations.

Other times, Sam will turn around and be a regular 11-year-old kid with regular 11-year-old issues.

"The basement is always a disaster," Colette said with a smile. Some problems are just easier to deal with.

'Sam's team' wins award

Westgate Elementary School teachers Nancy Abruscato, Christie Brennan and Melba Gustafson were given the Arlington Heights 2009 Educator Heart of Gold award for their work with Sam.

Abruscato, a kindergarten teacher, Christie Brennan, a resource teacher, and Melba Gustafson, a school psychologist, helped Sam, who is repeating the fifth grade because he missed most of it the first time around last year. Some of Sam's obstacles included apraxia, the loss of the ability to execute and carry out movements, and aphasia, a disorder caused by damage to the parts of the brain that control language.

When his teachers first began working with Sam in January 2008, he was at a prekindergarten level. A year later, Sam is back on track at about a fourth-grade level.

"This progress, in large part, is due to the superior academic rehabilitation program Sam has been lucky to receive," according to a village news release announcing the award. "They are all to be commended not only for their dedication to their teaching profession, but also for the humanity shown throughout Sam's long road back to school."

Abruscato, Brennan and Gustafson will be honored at the 2009 Hearts of Gold awards dinner on Saturday, Feb. 7, at the Sheraton Chicago Northwest, 3400 W. Euclid Avenue in Arlington Heights.

- Sheila Ahern

sahern@dailyherald.com 512336Chuck and Colette Benson of Arlington Heights were afraid they might lose their son Sam when a condition that inflamed his brain and nervous system caused him to be hospitalized for six months.Bill Zars | Staff Photographer 512383Sam Benson of Arlington Heights was diagnosed with a condition that inflamed his brain and nervous system which caused him to be hospitalized for six months. He is back on the road to recovery, here playing in his bedroom with his Godzilla collection.Bill Zars | Staff Photographer