Elaine's Story

Elaine's Story

Leaving a movie, the Speight family gets an instant replay.

Elaine, 13, is doing her impression of the main character. Her sister Renae, 14, and brother Dale, 11, have heard it before and sigh. But Linda and Steve can't help laughing as the voice of "Ace Ventura" issues from their petite daughter.

"He's easy to do," says Elaine, wanting a bigger challenge.

Elaine has a knack for performing that takes the focus off the personal drama she's played out since birth. Elaine has cystic fibrosis, a genetic disorder which causes the body to produce thick, sticky mucus that clogs the lungs and pancreas. Life is a constant struggle to breathe and to keep lunch infections and digestive problems at bay. Elaine requires daily percussion treatments for about 20 minutes three times a day when she's doing well, and as often as every four hours when she is ill. The rythmic pounding over different areas of the lungs helps to clear the mucus.

In addition, intestinal mucus creates an inability to absorb calories and nutrients, so keeping weight on is rough. At four feet, 10 inches, and 77 pounds, Elaine is doing well. That wasn't always the case. Five years ago, she could not walk though a grocery store without drawing stares, she was so thin. A pulmonologist at Phoenix Children's Hospital recommended a procedure to insert a tube that protrudes slightly from the abdomen, allowing Elaine to be hooked up at night to a feeding pump. The extra calories she gets through her nighttime feedings have helped her keep weight on, making her more resistant to infection.

While cystic fibrosis (CF) is a terminal disease, there is great hope on the horizon with advances in genetic research, lung transplants and better medications. Elaine is also fortunate to have the latest invention in percussion therapy, a vest that automatically does the work that used to be done by hand. The new technology allows Elaine to remain upright - a big improvement over hanging at various angles as was previously required - while the vest vibrates.

Like most kids with CF, Elaine has to go into the hospital periodically to have "clean outs," staying for as long as two weeks at a time. She's also had sinus surgery, a common procedure for CF patients.

Since her family moved to Arizona five years ago, Elaine ahs been treated by the pediatric pulmonologist at PCH and has been hospitalized there three times.

"I think it's great because it really focuses on kids," Elaine says of the hospital. She remembers being impressed that patients are encouraged to paint the windows in their rooms and was surprised by all the special events hosted at the hospital. "The people there are really involved with the families," she said.

With Elaine's outgoing personality, it's easy to see why she's popular at school. She's also focused. A straight-A student at Altadenda Jr. High, she plays the violin, is in the advanced math class, and hopes to become a marine biologist. She also likes bouncing on the family's trampoline, racing around on inline skates, dancing, swimming, or playing basketball or dodge ball.

"Your lungs are like muscles," she explains when asked how exercise impacts CF. "You need lots of activity - it gets the mucus out of your lungs.

But acting and modeling are clearly her favorite activities. She's already something of a celebrity. For the past four years, she's starred in television spots for the Cystic Fibrosis stair-climbing event. She's been interviewed for television and the press and is modeled in a fashion show to benefit the Emily Anderson Family Learning Center at Phoenix Children's Hospital.

No doubt she'll continue to entertain friends and family with her impressions of the stars. For those who know her, though, the rich and famous have nothing on Elaine. She's already a star as bright as they come.

More PCH Kids' Stories

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