Our year with the Campbells

A story of hope, love and strength

Bored and suffering the effects of chemotherapy, Tori pulls apart the ribbon of a balloon in her room at Primary Children's Hospital in Salt Lake City on Sunday, February 3, 2013. Most of the hair that grew back after her haircut has fallen out, her mouth has numerous sores, and the pain of swallowing and vomiting has forced her to be put on IV nutrition. SPENSER HEAPS/Daily Herald

Enthusiastic lovable vivacious

Victoria Campbell

Genelle Pugmire - The Daily Herald

Victoria Campbell, 17, has been the family’s ray of sunshine her entire life. She loves people and in turn they have loved her. Her enthusiasm is contagious. Aaron and Emily Campbell speak deeply about their oldest daughter.

“Tori, by nature, is our happiest child,” Aaron Campbell said. “Her laugh is contagious. Her smile can brighten an entire ballroom. As a father my primary goal is to keep her smiling, not just for her wellbeing, but also for mine. I have a very pessimistic, critical side of my personality which isn’t much appreciated at home and Tori, well, Tori is my antidote. I know if I stand in her presence long enough she will cure me of anything that ails my cantankerous soul. Her hope, her laugh, her eternal optimism will transform my hard, analytical world view and I will soften up and become putty in her hands. All it takes is a smile from Tori.”

Just a short time ago, Tori was an extroverted teenager who enjoyed traveling and learning. She was a year ahead in school. The family had been living in South America for two years. Tori learned Spanish by attending their public schools. That’s where the signs of MLD first appeared.

By any measure Tori was Ivy League material. “In my mind we could get the kids into prep schools,” Aaron said.

Emily Campbell said, “We were so focused on good stuff we didn’t have the time to worry. The decision to come back home and put the kids in public school was hard to do.”

After returning to Utah, Emily and Aaron Campbell noticed Tori was showing signs of digression in her muscle control and motor skills. It started as little things. For instance her walking gait had changed. She also had compulsive behavior problems. At first her parents thought she was just being a goofy teenager. People with MLD revert to their younger baseline personality.

“Victoria is vivacious, fun and optimistic all the time,” Emily observed. “It’s kind of a mercy.”

By 10th grade she couldn’t write, she had no math skills, she had significant reading comprehension and memory loss, according to Aaron. The dreams of Aaron and Emily for their oldest daughter would not be fulfilled.

Tori has felt the greatest effect of the MLD, because she has suffered the longest with it, but her undaunting spirit still shines through the frustration, the pain and the debilitation of her illness.

In September Tori was interviewed by her father in a 4-minute video. Her desire was to speak to being happy and why, with all she has suffered, she is happy.

“I just choose to be happy and live my life according to that,” Tori said. “My life is meant to be happy and that’s what I’m going to do.”

In the video her father asks: “How can you be so happy when you might die in a few years?”

Tori said, “I live in a home with parents who love me and would do anything for me and I don’t know how to describe how awesome my life is. Because I choose to take it in that way, wouldn’t you?”

Again, Aaron asks why?

“If this is the only life we have, I want it to be a good one and live it to the fullest extent,” Tori said.

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