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Jeff Kolpack, Published April 27 2012

12-year-old eyes Fargo Marathon 5K to bring awareness to lupus

West Fargo - The active little girl who was so good at soccer just wasn’t herself. The days in the summer when 12-year-old best friends Calista Soeby and Emmy Burtsfield would run together began to fade.

After soccer practice, Calista would rather sit around with heating pads on her legs. She was tired. Always tired.

“We would sit and just watch movies,” Emmy said.

That’s what lupus does; it makes you tired. When her face got so puffy from treatments that her eyes were barely visible, it was Emmy who stood up and defended her friend at Cheney Middle School in West Fargo.

“You could tell when she had lupus that something was wrong,” Emmy said. “It was tough. I was nervous I was losing my best friend, and I’m glad she’s doing OK.”

A rare disorder in kids

Calista Soeby is doing more than OK. She will participate in the Fargo Marathon 5K, and the challenge for everybody out there is easy: If she can do it, anybody can.

She and her mother, Maria Soeby, have run it every year for the last five years. Last year, Calista and Emmy, running together, beat Maria by about four minutes, and it never seemed that close.

“I couldn’t even see my mom at all,” Calista said.

The hope this year is more realistic, perhaps walk it in about 60 minutes. Recovery from lupus has been slow, but steady.

The 5K event on May 18 is all about awareness for the Soebys. To date, 55 people will be walking with the family, although 114 bought T-shirts.

Defined, lupus is a disorder of the immune system that causes inflammation to various parts of the body. The only reason the Soeby family knew about it is a relative of James Soeby, Calista’s father, has it.

It’s much more common in adults, which made Calista’s diagnosis difficult. Their doctor at Essentia Health in Fargo had never seen a child with lupus in his 35 years in medical practice.

A general rule: The younger a person contracts it, the more severe the affliction. In Calista’s case, it is severe.

Her kidneys have excess scarring and are fragile. Sun can cause a flare-up, so sun block is a staple. Internal organs are generally at risk.

She’s started playing intramural tennis and next fall will be cleared to play volleyball and dance. About the only noticeable side effect these days is she tends to get more tired than other kids.

If she goes 100 percent one day, she’ll take the next day to recover.

‘She’s normal again’

The first signs were swollen knees. Calista came home from soccer practice one day and Maria asked her one question: Did you fall?

The next day her hands were swollen. Later, it would be her elbows or fingers.

The breaking point came at a soccer tournament in Blaine, Minn., when she became excessively tired after a game despite not playing as much as the other girls. She slept for 14 hours and woke up exhausted.

The West Fargo Bombers won their age group, a great feat at such a big venue, but nobody was celebrating around the Soeby house. Calista’s joints started to swell again and that Monday, James and Maria brought her to the clinic.

Doctors, Maria said, were stumped. Blood work came back abnormal but nobody was sure why, she said.

“Then they tested for lupus – it never comes back positive in children, ever,” Maria said.

Two days before the family was scheduled to go to the Gillette Children’s Specialty Healthcare in St. Paul, the test came back positive. They’ve been “doctoring,” as Maria puts it, ever since.

At first, the visits to St. Paul were monthly. That spread to every eight weeks and now it’s every three months. They were there earlier this week.

“Her medication is working so well and keeping it under control,” Maria said.

She’s currently taking medication for blood pressure and lupus. She’s taking steroids, vitamins and what she calls “baby aspirin.”

Slowly, but surely, Emmy got her best friend back.

“She’s more up and active,” Emmy said. “And really, the tiredness in her face has gone away a lot. It’s still there, but I can’t tell anymore. I don’t even think of her having lupus. I know it’s there, but she’s normal again.”

Forum reporter Jeff Kolpack can be reached at (701) 241-5546.

Kolpack’s NDSU media blog can be found

at www.areavoices.com/bisonmedia

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