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Disease sidetracks girl with dreams of dancing

Valley Fever Reaches Epidemic Levels, But Harm Remains Hidden

Fellowship Story Showcase

Disease sidetracks girl with dreams of dancing

A 7-year-old girl's childhood is tormented by a disease that government agencies continue to ignore. Last spring, Emily did not have enough energy to dance – let alone walk down the hallway of her family’s home.

Disease sidetracks girl with dreams of dancing
Reporting on Health Collaborative
Saturday, September 8, 2012

By

Very little can stop 7-year-old Emily Gorospe from dancing.

Early this summer, she twirled in her bedroom, holding to her chest her colorful, ruffled dance costumes as if they were her dancing partners.

But last spring, Emily did not have enough energy to dance – let alone walk down the hallway of her family’s home.

“Tired doesn’t do it justice,” said Valerie Gorospe, Emily’s mom, as she sat on the floor of their home in Delano, south of Fresno. Besides her absolute exhaustion, Emily, who was a 6-year-old first-grader at the time, also had a very low appetite and a fever that would not go away, Gorospe recalled.

Doctors thought it was pneumonia and prescribed antibiotics. When she developed red blotches and welts on her skin, her doctor said she was just reacting badly to the medicine. After her mother pushed for more testing, an X-ray revealed a white spot larger than a quarter on Emily’s lung. The spot, the doctor said, was clear evidence not of pneumonia, but of valley fever.

Because the majority of patients with valley fever experience mild, flu-like symptoms, if they experience any at all, Emily’s pediatrician hesitated to prescribe powerful antifungal medication. But by September, a specialist put Emily on the drug Diflucan. She also ordered Emily to drop her lyrical, tap dance, and stretch classes, and only take one ballet class each week.

 “I think that was probably the most painful thing I’ve had to go through as a mom – seeing her be so heartbroken about being told she can’t do something that she loves,” Gorospe said.

Since contracting valley fever, Emily has missed out on more than dancing.

She was often too tired to make it through the full school day, and her second-grade schoolwork suffered. She monitors the air quality forecasts on her mother’s iPhone and when the air quality is poor – as it often is in the San Joaquín Valley – Emily can’t play outside during recess or after school.

She has spent relatives’ birthday parties watching movies inside the house, joining the celebration outside just to quickly sing “Happy Birthday.” She has to pull a T-shirt over her nose and face when she attends her brother’s baseball games on blustery days.

Instead of mastering her dance moves, Emily has mastered coping skills for the doctor’s office. Each month, she said, when she gets her blood drawn, “I just pray and I just breathe,” she said, demonstrating a long inhale and exhale. “She calls it breathing through the pain,” Gorospe explained.

Despite her bravery, Emily has struggled with having a serious illness at such a young age. Her constant refrain for the past year has been: “I hate valley fever. Why did it have to pick me?”

It’s also been tough on her family. The costs of the disease add up: $15-co-pays when she gets her blood drawn and X-rays taken, between $30 and $40 for her medication, gas for the 65-mile-round-trip from Delano to the Kaiser facility in Bakersfield, and $75 for an inhaler with a chamber, which is supposed to help clear the debris from her lungs.

This spring, while watching the movie, “The Lorax,” which has an environmentally conscious theme, Emily was inspired to do something to improve the region’s air quality, and ensure other kids don’t get sick from other illnesses related to air quality, such as asthma. She began raising money so she could plant trees around her community.

“Trees make the air better,” Emily explained.

There’s also a good scientific reason to plant more trees. Planting in soil where the fungus grows is one of the few ways to keep the cocci fungus’ spores out of the air.

About a year after she first contracted the disease, Emily felt significantly better.

“She looks as if she is the same old Emily,” Gorospe said. She turned to her daughter, and asked how she felt to be healthy enough to dance again this summer. “Excited!” Emily said, throwing both arms in the air.

But in July, Emily received worrisome news: The doctor had spotted valley fever on her lymph nodes. Those growths later shrank, but they left Emily and her mother with a terrible reminder. She will have to live with the possibility of the disease returning at any time.

About This Series

This project results from an innovative reporting venture – the Center for Health Journalism Collaborative – which currently involves the Bakersfield Californian, Radio Bilingüe in Fresno, Valley Public Radio in Fresno and Bakersfield, Vida en el Valle in Fresno, Hanford Sentinel, the Voice of OC in Santa Ana, the Arizona Daily Star in Tucson, La Estrella de Tucsón and the Center for Health Journalism. The collaborative is an initiative of the Center for Health Journalism at the University of Southern California’s Annenberg School for Communication and Journalism.

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