School without germs
A video link is a window of learning for a boy with fragile health.
By TOM MARSHALL, Times Staff Writer
Published August 27, 2007
SPRING HILL - Mrs. Lewis had a perfect voice, but her video image was a mess - doubling at times, coming and going, pixels dancing. ¶ Kevin O'Connell saw a few kids dart past the teacher as the clock struck 9 a.m., searching for their seats in the third-grade class at Spring Hill Elementary. ¶ He peered intently at his screen, and they peered back at him. ¶ "Good morning, Kevin!" Mrs. Lewis said, as the class came to order. "Are you ready?" ¶ He nodded. ¶ Technical glitches aside, they were live.
Nine years ago, Kevin was born with a rare immune system disorder, Hyper-IgM Syndrome. Without a bone marrow transplant, like the one his body rejected at age 4, a common virus - a stranger's careless sneeze, a feverish classmate - could lead to a fatal infection.
His parents have strictly limited his contact with the outside world. Shopping trips are fine if he wears a mask, and friends can visit if they're not sick. During flu season, he lives at home in a virtual lockdown.
Germ-filled schools were out of the question until Thursday, when Hernando County schools rolled out a videoconferencing system to connect Kevin with his peers and teachers. It was the first time he had ever venturedinside a school.
The public-address system was squawking over his tiny speaker. Time for the Pledge of Allegiance.
Kevin leapt out of his chair, a mile from his classmates and just down the hall from his own bedroom, and pledged.
* * *
He was 21 months old when his mother, Joan, first noticed a problem.
"He got these huge oral ulcers," she recalled. "I said, 'There's something wrong with this child.' They said, 'No, no, no, it's just a virus.' "
Mom was right. As it turned out, she was also the carrier of Kevin's disease, in which blood cells that normally fight off infections fail to do so.
Joan turned her son's illness into a full-time job, researching the dismal statistics - few with Hyper-IgM live past their 20s without a successful bone marrow transplant - and hunting down researchers for an effective treatment.
Beginning in kindergarten, Kevin had lessons at home with a visiting district teacher.
Joan also began the three years of talks with school officials that led to the purchase of videoconferencing equipment with $60,000 in state grants. Officials hope to eventually make the system available to homebound students in all 21 district schools.
These days, she works part-time at Publix to keep her medical benefits, and has never lost a coverage fight with Blue Cross/Blue Shield. Her husband, John, a retired county worker, stays at home with Kevin when she can't.
Kevin's doctor-approved treatment includes weekly antibody injections and reduced human contact. Some children with the disease attend school, getting monthly injections and lots of antibiotics, but they're constantly sick.
"Kevin's only had a cold twice in his whole life, which is unheard of," Joan said.
For now, she's not willing to risk another body-ravaging bone marrow transplant, such as the one Kevin's oldest brother gave him.
"He looks great, he looks wonderful," she added. "It's just that inside he's missing an immune system. So we're preserving him till they find a cure."
* * *
There were network problems at BellSouth, but Christina Lewis forged on with the day's lessons.
"I don't want you to fret about getting your work done today," she told Kevin, as the class prepared for reading. "I want you to get used to using your camera."
He toggled the camera around the room, peeking at his classmates, while his father tried to keep him on task.
"Dad, that's how you zoom it," Kevin said, pushing his father's hand from the controls. "Don't press that."
By 11 a.m., everyone was tired. It had been a long, intense morning.
"She wants you to do the whole page," John said. "Let's go. Zero plus what equals seven? I'm helping to try and get you started."
"I didn't eat breakfast," Kevin complained.
"I tried to get you to eat but you didn't want to," his dad said. "Now you're stuck till lunch."
A few minutes later: "Good job!" John said. "See? You've just got to stick with it."
* * *
Walking down the street, Kevin might pass for an ordinary 9-year-old boy: freckles, one tooth missing up front, an affinity for rapid chatting.
Unlike the famous "Boy in the Bubble," the late David Vetter - whose more serious condition, Severe Combined Immunodeficiency Syndrome, prompted his parents and doctors to isolate him in a plastic bubble in the 1970s - Kevin gets out occasionally.
There are the shopping trips, and once a year the family goes ice skating at an empty rink. Neighborhood children can attend Kevin's birthday party every August, as long as they're healthy and haven't gotten live vaccines lately.
They went bowling once, but Kevin caught a cold and wound up in the hospital with tubes down his throat, terrified.
"He said, 'Bowling isn't worth it,' " Joan said. "We got him a ball and shoes, and they've been retired ever since."
Inevitably, there are plenty of rules at Kevin's house. Everyone washes hands upon entering. And both Joan and John repeat a mantra to strangers: "We don't shake hands around here."
Perhaps as a consequence of such restrictions, Kevin enjoys a bit more freedom to view the world through TV's distorted lens. Pro wrestling reigns in Kevin's bedroom.
"Sometimes it's real, sometimes it's fake," he said, showing off his collection of posters and prize belts. "I can't even tell when it's fake. My friend Josh likes it, Joey likes it, and Jeremy a little bit."
Has he ever wrestled for real?
"We can't wrestle, my parents say that," Kevin said, lowering his voice and grinning. "When they're not watching, we kind of do."
But they always wash their hands, he added.
Through TV, he's also gained a view of the world in which schools are chaotic places, where girls are always sweet and boys throw spitballs at the teacher.
"I'm lucky I'm right here," Kevin said in his kitchen, the day before school began. "Because there could be bullies."
* * *
The afternoon was winding down as Mrs. Lewis moved on to the science lesson. There would be a fossil-making activity with clay one day soon, and a lab on comparing plants. Kevin could take part in it all, she said.
"Everyone's going to come by your camera and hold up some stuff, so you can compare just like we do," Mrs. Lewis told him.
"I just want to ask one thing," Kevin said. "The science project can be anything, right?"
He knew just what he wanted to do: something that involved engineering, hopefully with his Legos.
Soon enough, it was time to go.
"Kevin, you're dismissed," she said, as his new classmates waved. "Everyone say bye."
It was a good day.
Tom Marshall can be reached at firstname.lastname@example.org or 352 848-1431.
What is Hyper-IgM Syndrome?
For most people, T cells and B cells in the bloodstream defend the body against infection. But women who carry the gene for Hyper-IgM on an X chromosome can pass it on to their offspring. Since females have two X chromosomes and males have only one, it's the males who bear the full brunt of the disease.
Source: St. Jude Children's Research Hospital; Gene Reviews/University of Washington
[Last modified August 27, 2007, 00:54:41]
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