Herald Journal - Enterprise Dispatch - Delano Herald Journal
Waverly fourth-grader diagnosed with rare disease
April 25, 2011

By Starrla Cray
Staff Writer

WAVERLY, MONTROSE, MN – “We thought it was pneumonia,” Sarah Larson of Waverly said, explaining that her 10-year-old daughter, Gwyneth, had developed a low-grade fever, runny nose, and cough a few days before New Year’s.

“Just standard sick stuff,” Sarah said.

The doctors gave Gwyneth an antibiotic, and Sarah and her husband, Matt, thought that would be the end of it.

However, the uncertainty and fear were just beginning.

“It didn’t get better and it didn’t get better,” Sarah said.

Gwyneth went back to the doctor, where she was prescribed another antibiotic and steroids.

For a little while after that, she seemed to be improving, and was even able to attend school.

“All of a sudden, she threw up,” Sarah said. “There was a little blood in it, but it wasn’t bad. We thought it could be a stomach bug.”

Two days later, Gwyneth was in the emergency room with excruciating pain.

She was told she had gastritis (inflammation of the lining of the stomach), and had to be in the hospital for about eight days.

“After that, they gave us a ton of medication and sent us on our way,” Sarah said.

Gwyneth’s condition didn’t improve after she arrived home, though. She wasn’t able to eat much and started losing weight.

When the doctors looked at the inside of Gwyneth’s stomach, they could see that it was inflamed, but they weren’t able to pinpoint the cause. At a loss for options, they suggested that maybe Gwyneth was depressed.

“It was really frustrating,” Sarah said.

Ten days later, Gwyneth had lost a total of about 14 pounds, and was barely able to get out of bed.

She was directed to the hematology/oncology department (which treats blood diseases and cancer), and a computed tomography (CT) scan showed nodules in Gwyneth’s lungs.

“Nobody had any clue what it was,” Sarah said.

Gwyneth waited in the hospital for about five days before a pulmonologist was available.

“The pulmonologist said he thought it might be this Churg-Strauss disease,” Sarah said. “All the other doctors were like, ‘no way. That’s one in a million.’”

Churg-Strauss Syndrome (CSS) is a rare disease that affects small- to medium-sized arteries and veins. According to the CSS association, it’s estimated that it affects between 720 to 3,000 people in the US.

The chance of it occurring in someone Gwyneth’s age is slim, with the average age of diagnosis at age 35 to 45.

Unfortunately, the only way to know for sure was to do an open-lung biopsy.

“The other doctors didn’t want to put her through that if it wasn’t necessary,” Sarah said.

Feeling that they had no other option, however, Sarah and Matt consented to the surgery. 

Treatment and outlook
The results revealed that Gwyneth is in the third and final stage of the disease, with multiple-system involvement.

Because CSS is so uncommon and ranges in severity from patient to patient, the prognosis is uncertain.

“There’s not a lot of data,” Sarah said. “They say that about 65 percent survive beyond five years, but we don’t really know what will happen.”

For the next two years, Gwyneth will be given chemotherapy treatment and high doses of steroids, in hopes of putting the disease into remission.

“She’s a hard-core kid. If anybody can beat it, she can,” Sarah said.

This isn’t the first time the Larsons have had a health scare with Gwyneth.

At age three, she had mono that affected her stomach, and had to be fed intravenously for 21 days. She was diagnosed with primary immune deficiency, but the family was told she had outgrown it.

About the Larsons
Sarah describes Gwyneth as a wonderful, active daughter who is full of confidence.

“She’s a gymnast and a dancer, and she wants to be an actress when she grows up,” Sarah said.

Sarah co-owns Waverly Café and Catering and Fat Matt’s Firehouse Pizza in Montrose. She is active in the community through the Montrose-Waverly Chamber of Commerce, and Matt volunteers on the Waverly Fire Department.

Matt and Sarah celebrated their 13th wedding anniversary in mid-April. They were high school sweethearts, marrying when they were 18.

To learn more about Gwyneth and to follow her progress, go to her Caring Bridge website, www.caringbridge.org/visit/gwynethlarson.

Gwyneth’s benefit
A benefit for Gwyneth Larson will take place Saturday, May 7 from 2 p.m. to midnight at Waverly village hall.

An account for donations has been set up at Citizens State Bank of Waverly. People who would like to donate should tell the cashier it is for the Gwyneth Larson fund.

Here is the schedule of events for the benefit:

• 2 p.m. – bean bag toss tourney

To sign up, call Josh at (612) 366-3463.

• 2 p.m. – children’s games

• 2 to 6 p.m. – pulled pork sandwich meal

• 4 to 7 p.m. – silent auction

For information regarding donations, contact Sam at (612) 327-1264.

Items can be dropped off at the Waverly Cafe or K&K Recycling in Waverly.

• 8 p.m. to midnight – entertainment by MelloRoar Band

About Churg-Strauss Syndrome
Churg-Strauss Syndrome (CSS) is a very rare, life-threatening autoimmune disease involving inflammation of the blood vessels. Here are a few facts about the disease, from the CSS association:

• CSS is not inherited, and it is not contagious. No one knows what causes it.

• There is no cure for CSS, but remission is possible.

• Estimates about the incidence of CSS vary widely and range from 2.4 to 10 cases per 1 million people, or roughly 720 to 3,000 people in the United States.

• CSS affects men slightly more often than women, with the average age of diagnosis at 35 to 45.

•  Some people with CSS have very mild symptoms that barely impact day-to-day life, while others suffer   from serious complications.


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