From Deseret News archives:

Big sis lifts up ailing brother

Boy's fragile health also shapes his sister's life

Published: Sunday, Sept. 3, 2006 10:20 p.m. MDT
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Children are resilient, and that's a word that describes Emily well. In spite of bouncing around between family and friends, she's managed to become the type of regular kid she wishes Trevor could be.

"She seems to have adjusted beautifully," Jenny says. "She has a wonderful outlook on life."

Jenny describes her daughter as smart (near the top of her class), articulate, inquisitive, someone with an inner peace and happiness.

Jenny's sister, Dolly Palmer, is struck by Emily's coping skills. Emily has bunked at her aunt's house in North Ogden many times.

"She's always been just the type of child who's more inward — she doesn't tend to express her emotions in a way that is visual," Palmer says. "She never causes fits or tantrums.

"I'm amazed at the level of maturity in which she's capable of understanding the events in her life."

When Trevor is at his most fragile, in and out of the hospital, Emily's strength becomes apparent. She's more quiet, not calling attention to herself or adding stress to her parents' lives, Palmer says.

"She doesn't see to her own needs," she says. "You can tell it's an effort on her part — when it's stressful, you can tell it's an effort."

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When Trevor was born, a then 17-month-old Emily displayed "hostile" behavior as most of her parents' attention shifted toward him.

"She was too young to understand," Jenny says.

Emily and her brother have been enjoying their summer together. And now Trevor attends Grandview Elementary School with his sister.

But there will be more visits to doctors, probably more surgeries, more time and attention focused on keeping Trevor alive.

He has kidney problems that have required several surgeries. His lungs are a problem on and off — from recurrent infections to left vocal cord paralysis. He has a deficiency in the bone supporting the brain that lets it sag into the spinal column, where fluid could build up around his brain. He might develop hydrocephalus at some point, Day says. "He might need surgery to prevent fluid from putting pressure on his brain."

That's relatively stable right now, but the doctors and Trevor's parents know things could change.

His biggest challenge continues to be his heart. "It just keeps falling apart," is how Jenny puts it.

Trevor was born with what Day describes as a constellation of heart defects and has undergone multiple heart surgeries over the short span of his life. Recently, Dr. John Hawkins performed a major operation to fix two of four valves, which were leaking. Other surgeries have closed a hole in the heart and fixed other defects. Sometimes, after a surgery, Trevor fights infection.

Under pressure

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Stephen Speckman, Deseret Morning News

Emily Buck, whose brother has had 14 surgeries, plays on the climbing wall at the Ogden Athletic Club.

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