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West Valley student’s dad’s ALS forced her to grow up fast

Thu., May 23, 2013

West Valley High School senior Alisse Middleton shows off the tattoo of a man’s signature on her right arm.

“It’s my dad’s signature,” Middleton, 18, said. “It’s from an old union card. The artist blew it up and made a stencil.”

It is a loving remembrance for Middleton, who lost her father, Richard, to Lou Gehrig’s disease – amyotrophic lateral sclerosis – when she was 12.

“You never know what you have until it’s gone,” Middleton said. “There is not a day that goes by that I don’t think about him.”

Following her parents’ divorce when she was 6, Middleton lived with her father in Seattle’s Magnolia area.

A little while later, her father’s arm started hurting after an automobile accident.

“The first year we weren’t sure what it was,” Middleton said of what turned out to be ALS. “We just thought it was tendonitis of his arm because he was a contractor.”

As the disease progressed and spread, Middleton became the head of their household at a very young age. She was in charge of her father’s care, having to schedule doctor appointments and arrange for transportation.

“My dad couldn’t drive anymore,” Middleton said. “So we used public transportation or I organized private disabled shuttles from the house to the hospital.”

Middleton, through coaching from her father, learned to pay bills and balance a checkbook at age 12.

“Being his nurse, being the person who ran the household,” Middleton said, “it taught me to think about more than myself.”

Eventually Hospice provided in-home nursing care for her father, though Middleton still had to oversee everything. During this time she missed a good deal of school.

“It was really hard to either stay at school or go to school at all,” Middleton said. “Sometimes nurses wouldn’t show up, or there were times with weird nurses. They would wander our house. I would have to come home and ask them to leave.”

Eventually, they hired a trustworthy, full-time nurse.

When Middleton was in sixth grade, the disease progressed to the point her father needed to be admitted into a nursing care facility. She found herself faced with the decision about where she was going to live.

Estranged from her mother, she moved to Spokane to live with her aunt and uncle, Jana and Wayne McKnight, in August 2007. The McKnights had three daughters, one living at home at the time.

About a month after her move to Spokane, her father’s health took a turn for the worse. Middleton and her aunt raced back to Seattle.

Her father died that September.

“I appreciate the time I got to have with him,” she said. “I at least got to say good-bye.”

Moving to a new town and starting over, Middleton struggled initially but eventually adapted and flourished.

“She’s a survivor,” said Wayne McKnight, Middleton’s uncle and West Valley High’s athletic director. “That was pretty rough times but she survived and grew from it.”

Middleton said the struggle and heartache have given her a better appreciation of what’s important in life.

“You have to stop and smell the roses every now and then,” Middleton said. “You never know if you’ll have another chance.”

It also gave her a strong sense of self-reliance, respect for others and a healthy perspective on money.

“What sets Alisse apart from other students is that in spite of what could have been an excuse to quit, slack off, or rebel,” West Valley counselor Drew Wendle said, “Alisse has become a young lady with goals, a sparkle that is infectious and a sunny outlook on the world around her.”

Middleton is a member of West Valley’s National Honor Society with a 3.67 GPA. She has served on the blood drive committee for two years and this year is in charge of the school blood drives.

She’s also involved in the DECA Club and plays doubles on the varsity tennis team.

Middleton is enrolled at the University of Washington for next fall and is planning to pursue a business degree.

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