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Rasmussen's encephalitis

Rasmussen's encephalitis is a rare, progressive neurological disorder, characterized by frequent and severe seizures, loss of motor skills and speech, hemiparesis (paralysis on one side of the body), encephalitis (inflammation of the brain), dementia, and mental deterioration. more...

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The disorder, which affects a single cerebral hemisphere, generally occurs in children under the age of 10.

Treatment

When seizures have not spontaneously remitted by the time hemiplegia and aphasia are complete, the standard treatment for Rasmussen's encephalitis is surgery to remove or disconnect the affected part of the brain (hemispherectomy). Although anti-epileptic drugs may be prescribed initially, they are usually not effective in controlling the seizures. Alternative treatments may include plasmapheresis (the removal and reinfusion of blood plasma), ketogenic diet (high fat, low carbohydrate), and steroids.

Prognosis

Prognosis for individuals with Rasmussen's encephalitis varies. Untreated, the disorder may lead to severe neurological deficits including mental retardation and paralysis. In some patients surgery decreases seizures. However, most patients are left with some paralysis and speech deficits.

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Graduation 2004: Against the odds
From Deseret News (Salt Lake City), 5/20/04

In the next few weeks, some 34,600 Utah high school seniors will don caps and gowns and parade across stages around the state to receive their diplomas.

Among them are young people -- and some not so young -- who have overcome daunting, even seemingly insurmountable, obstacles to earn their high school diploma.

In today's Deseret Morning News, we profile several of those graduates.

Off the streets and on road to success

Tiffany Erickson

Deseret Morning News

When Theresa Chase, 38, turns her tassel this June, it will represent more than passing a series of classes. It will mean she has been drug free for five years. It will mean she reached a goal that has evaded her for decades. And it will mean she picked herself up off the street, traveled the rough road back to the land of the living and not only survived but succeeded.

Moving to Sandy from Ohio when she was 10 marked the end of Chase's happy childhood. Adopted and of Eastern Indian and Native American descent, she was dark, different.

Chase's chestnut hair, coffee-brown eyes and olive skin seemed to invite harassment, racial slurs and abuse at school and at church, despite the fact that her father was a bishop in The Church of Jesus Christ of Latter-day Saints.

"They ripped my clothes, pulled my hair and called me horrible names," said Chase.

School stopped being a priority, and at 17 she was pregnant and flunking.

She finally had a talk with her mom about a friend who had gotten pregnant and didn't know what to do. Her mother told Chase that if she herself ever got pregnant she would be kicked out.

"The next day when my mom dropped me off at school, I walked in the front doors of Valley High and walked out the back," said Chase. "I didn't go too far, though -- downtown Salt Lake."

She lived in a home for expectant teen mothers until a few months after her son was born. But a year later she had to give him up because she couldn't take care of him.

She started using heroin and cocaine and lost her job. Homeless, jobless and penniless, she started sleeping wherever she could, and her main focus was her next fix.

She married another addict, and after traveling for a time they lived in a tent behind some businesses downtown. As her addictions grew to other drugs, she started working the street -- North Temple and State Street -- for drug money. Chase estimates she made more than a million dollars in her years as a prostitute. It all went to drugs.

"I wanted to die," said Chase. "But it didn't matter how many times I got raped, how many times I got beat up or was held at gunpoint -- I just kept going back because I was so addicted."

Chase was arrested 19 times. She fled the drug court program twice, and when she met her current husband, Marvin Chase, she had two $25,000 bench warrants. Days after they met, she was arrested for the last time.

She'd had a handful of experiences at death's door, was at the end of a destructive 15-year marriage, had overdosed twice, been hospitalized countless times. Chase decided it was time for that life to end.

"By then, I was ready -- I was ready to get clean and ready to have a life."

She was accepted back into drug court program again while serving time, which ended up being about four months in jail and probation. While in jail she married Marvin, who has been by her side since.

She was released from an in-house rehabilitation program to her new home. Within weeks of being in rehab, she became a stepmother of three boys and started a full-time job.

"It was really hard, but they (her family) were so supportive, I couldn't have made it through that first year without them," said Chase.

Chase heard about Horizonte Instruction and Training Center's education program, free to drug court clients and graduates. She'd wanted a diploma for a long time.

"I really pushed education with my kids but didn't even have my diploma," said Chase. "I thought, 'How can I sit here and emphasize school when I can't even do it myself?' "

It was no small mountain to climb. She considered dropping out a few times -- dealing with the stresses of life, her inner demons and physical hardships that had her in a wheelchair for a time.

But with a strong support system at home and a zealous instructor who encouraged her and brought her homework when she couldn't make it to school, she stuck with it. In December she was approved for graduation and will march to get her certificate in June.

"It's not all over and it's not easy -- I live with these scars every day of my life," said Chase pointing to track marks on her arms, legs and neck. "Every day I get up I see them and they are reminders for me."

She will start Salt Lake Community College in the fall and later hopes to transfer to the University of Utah, to earn a Ph.D. in psychology and become a substance abuse counselor.

It will be a long road, but Chase says from where she has come, it will be nothing she can't handle.

"I don't think a Ph.D. will be as hard as kicking heroin. . . . I am going all the way."

E-mail: terickson@desnews.com

Student doesn't let surgery stop him

By Marin Decker

Deseret Morning News

HIGHLAND -- Most high school students would be offended if a teacher said they were using only half of their brains.

Lone Peak High senior Chris Hocker probably wouldn't be -- because half of his brain is all he has.

Though you wouldn't know it to look at him, or even talk to him, at age 14, Hocker had the right hemisphere of his brain completely removed. The surgery was the only treatment for a rare nervous system disorder called Rasmussen's encephalitis, which causes chronic inflammation of the brain and uncontrolled seizures.

But 18-year-old Hocker hasn't let that hold him back. Though he had to completely relearn physical movement after the surgery, later this month he'll walk with his classmates at graduation and receive a degree of completion.

Hocker started having seizures at age 8, and despite medication, doctors were never able to control them well.

"He spent the next six years having seizures without a whole lot of control, and then he all of a sudden started having them about every five minutes for about six months," said Hocker's mother, Tami.

Doctors in Minnesota, where the family lived at the time, performed a biopsy and discovered the disorder. Hocker recalls being nervous before the procedure.

"(The doctors) did talk to me about it, but I was still afraid."

His mother was scared as well, unsure of what abilities Hocker would have after the surgery.

"Lots of people lose their ability to have speech, lots of people lose their memory, because the brain is so complicated, it does all the same functions for everybody, but where it learns to do those functions can be different parts of the brain," she said.

But Hocker didn't have much choice. Doctors said if the procedure wasn't performed, he would continue to have frequent seizures for the next 30 years, and eventually the right hemisphere of his brain would be destroyed anyway.

After the surgery, Hocker described feeling different, but ready to push forward.

"What's next?" he recalled. "That was kind of the idea that was running through my head. I was probably wondering why I couldn't move my left arm. It was a whole new feeling, and you just have to relearn."

The procedure caused hemiparesis on Hocker's left side, leaving him without the use of his left hand and only minimal large muscle movement in his left arm and leg. He had to relearn most physical movements, including walking, but could still talk and write, and did not lose memory.

Though Hocker had challenges to overcome after the surgery, he says he'd choose it again, because it feels "wonderful" not to have seizures anymore.

Hocker has coped with more than just physical obstacles. Three years ago he lost his father to leukemia, and the Hockers moved from Minnesota to Utah.

As a result his medical problems, Hocker missed the equivalent of four years of school. To receive his degree of completion -- the equivalent of a diploma for special education students -- he split his time between regular and special education classes.

Hocker is interested in Web design and will probably take technology classes at Mountainland Applied Technology College after graduation, hoping to eventually enroll at Utah Valley State College. He is also intrigued by languages and earned B's in his high school French courses.

Hocker said he's learned through his experience that the mind is amazing.

"Don't ever hold your mind back; it's a wonderful tool," he said. "Use it to your best ability. I've learned quite a bit about myself. Sometimes that's what you need to do first, before you can start to use (what you've learned)." He said perseverance is the key. "You just gotta stick with it," he said. "The mind and the heart are probably the most powerful things everybody has. If you know how to use them, you can about do anything."

E-mail: mdecker@desnews.com

Deaf twins strive for 'normal' life

By Marin Decker

Deseret Morning News

OREM -- Shari and Shantel Marshall dread watching movies in class. They don't mind that the high school films are old and often boring. What bothers them is many of the films don't have closed captions.

The twins, who will graduate from Timpanogos High School this month, are profoundly deaf, meaning they cannot hear sounds below 91 decibels without their hearing aids. Regular speech is usually around 60 decibels.

Shari and Shantel will both attend Utah Valley State College in the fall, graduating from Timpanogos with GPAs above 3.8. Shantel recently completed her AP photography exam. Shari works at Timpanogos High preschool and plans to go into early childhood education.

Both have attended regular public school classes since kindergarten, understanding what teachers and classmates say by reading their lips and using hearing aids.

The twins were likely born with the hearing loss, said their mother, Christine Marshall.

"When they were born we thought that they could hear. When they were 3 and 4 they still couldn't really talk; they didn't speak much at all, and that's when we started noticing it."

Shari and Shantel attended regular school at the encouragement of a special ed preschool hearing specialist.

"She thought they would be able to learn to speak better being around people who spoke, and we live in a speaking world, so it's hard to function (if you don't speak well)," said their mother.

Attending regular classes often presented challenges.

"The teachers would always face the board, and so we couldn't understand, because we read lips a lot," Shari said. "They would turn around and we'd have to ask a friend what they said, because we would miss it."

In elementary school the twins wore a Comtek, a type of assisted- listening system that sends a signal from a device the teacher wears straight into a receiving hearing aid.

"But when they got to junior high, it was hard, because everyone wanted to know why they had to have that," their mother said. "They had seven teachers, and they'd have to give it to them at the start of class and get it back at the end." Teachers would also often forget to turn their device on, Shari said.

The twins refused to wear the Comteks from junior high on. But teachers have been accommodating.

"All of their teachers have just been great to work with them and try to help," their mother said. "Last year Shantel took film literacy. We didn't really know what it was, but the whole thing was watching movies, which she can't hear at all. But he was really good to change his plan and he did get all movies that had closed captioning."

Some social aspects of high school have been problematic.

"There were some games that we couldn't play, and when we go to assemblies, we never understand what they say -- also plays," Shari said.

The twins also have trouble understanding what's said in groups.

"People keep telling me I changed the subject, and I'm like 'I thought that's what we were talking about,' " Shantel said.

Talking on the phone is difficult for both girls, though Shari can sometimes get by. Shantel often uses a speaker phone so family members can help her understand.

"They can't just call someone, so they'll go drive to their house instead, because they can't hear on the phone," their mother said. "If they do and there are particulars, like a time or place or something, they're never sure if they heard it right."

Still, the twins are glad they chose to attend regular school.

If they had attended special ed classes, "We probably wouldn't have been involved or had that many friends," Shari said. "It helped us be more normal and regular than we would have been."

Their school counselor, Karrie Whitney, said the two have pushed through their course work without much external support.

"They were never looking for 'how can you help me,' but instead were always willing to do what they needed to do," Whitney said.

E-mail: mdecker@desnews.com

School is anchor for at-risk teen

By Jennifer Toomer-Cook

Deseret Morning News

For some students, school is a begrudging necessity, a conduit for social networking or a stepping stone to bigger and better things.

But not for Adam Montero. School is his saving grace.

Tossed between homes of parents, grandparents and even state child protective custody, Montero made school his anchor.

Now, the Murray High senior and restaurant manager will become the second in his family to graduate from high school, and the first to go on to college.

"It's nice to know the chain can be broken," he said.

Montero remembers life before kindergarten as clearly as the waters in which he and his stepdad would fish. Things were calm then.

But all that sank once he entered school.

His mother and stepfather divorced. He lived with one biological parent and then another. But his family was in turmoil. Once he witnessed an attempted suicide. Police got involved. So did child welfare workers.

In high school, Montero was able to settle at his stepgrandfather's house in West Valley City, where he lives today.

Such family turmoil typically puts children at risk for academic failure.

But Montero wouldn't become a statistic. He recalls dreaming about his future. He knew education would be his ticket to a better life.

"(As a child) I would rather be at school than at home," he said. "I knew if I didn't get through school, there would be not much afterwards. I reminded myself every day, this is what I want, this is how I can get it."

Montero delved into his studies, which included a gifted program in Salt Lake City elementary schools. Once he arrived at Murray elementary schools, he chose to remain at that district's schools, even when his personal situation took him to Salt Lake City and West Valley. He simply wanted consistency and was happy to show up 30 to 45 minutes early every morning.

Such punctuality came in handy at age 15, when he fibbed about his age to get a job at a West Jordan McDonald's. He since has been named manager. And his top skills at the store helped earn his way to work in Athens, Greece, during the Summer Olympics in August.

"He's outstanding," said Amber Bates, McDonald's store manager who praises Montero's hospitality skills. "I look at him and think, wow. He's been through so much and come so far. He's amazing, and incredible to be around."

Montero says music -- he's a percussionist who writes rap music lyrics -- helped him survive. So did academics.

He's always loved math, logic and learning by discovery. He has completed advanced placement calculus and statistics courses. He passed the calculus test last year, making him eligible for college credit, and awaits the statistics score. He takes concurrent enrollment classes through Salt Lake Community College in computer technology and certification classes, among others.

"It's cool he's even graduating," let alone with college credits, assistant principal Glo Merrill said. "Here he works 30 to 40 hours a week since he was 15 and still maintains good grades at school."

Montero earned a 32 on the ACT college entrance math test. He maintains a 3.2 GPA. He will attend the University of Utah in the fall, with the help of a $1,000 scholarship for student achievement, and major in business. He hopes to have a business of his own someday -- ideally, a record company.

"Kids my age, their top priority is friends. They've always got to be having fun. For me, it (is) work and school," Montero said. "If I had a chance to take any of it back, I wouldn't. If I hadn't gone through what I went through, I wouldn't be who I am today. Though I don't have much now, I have potential for the future."

E-mail: jtcook@desnews.com

Copyright C 2004 Deseret News Publishing Co.
Provided by ProQuest Information and Learning Company. All rights Reserved.

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