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A walk of courage

Deepa Bharath

Courtney Poulsen is 5. And she loves to do things 5-year-olds like to do.

She can’t wait to go with her parents to Dairy Queen to get a scoop or

two of her favorite chocolate ice cream. She likes to watch “Lion King II

-- Simba’s Pride” on video and play rough with Daddy when he gets home

from work.

But what is not obvious about Courtney is that she has cystic fibrosis.

It is a disease that causes the body to produce a thick, sticky mucous

that clogs the lungs, causing chronic infections and interfering with

digestion.

Courtney’s mother, Megan Poulsen, said she and her husband, Scott, were

shocked when their daughter was diagnosed with the fatal disease when she

was almost 4.

“We tested her three times to make sure,” Poulsen said. “And it came out

positive every time. You fall in love, you get married, you have kids and

boom. It just hits you. You have no clue.”

But Courtney is a trooper. She not only prides herself on being able to

pop four pills at a time, but she also is excited about participating in

a 10K walk for cystic fibrosis May 20 in Huntington Beach.

“It’s a long walk,” the Yorba Linda girl said with a smile. “But it’s

going to cure cystic fibrosis.”

About 30,000 people in the country have cystic fibrosis, according to the

Cystic Fibrosis Foundation’s Web site. Most of them are children and

young adults. The average life span of a cystic fibrosis patient is said

to be about 33 years.

Courtney doesn’t know the meaning of the word “fatal.” She just learned

to say “cystic fibrosis.” Younger children usually refer to the disease

as “65 roses” -- it’s easier to pronounce and sounds just about the

same.Courtney likes to listen to the story of “Mallory and her 65 Roses,”

the tale of a little girl who hides from her parents to avoid taking

treatment and pills but finally gives in when she learns that it’s good

for her.

“I’m good with pills,” Courtney said. “But when I cough, that doesn’t

feel good.”

When the mucous congests beyond a certain point, Courtney’s mom pounds

gently on her daughter’s chest, back and side to release the phlegm.

“Mucous is sticky, like gum when it’s stuck to your shoe,” said Courtney,

repeating a line from the book.

Poulsen said Courtney’s situation has made her focus on the positive.

“We’re thankful. She’s doing well for somebody with cystic fibrosis,” she

said. “We’re glad we have another little girl who doesn’t have it.”

Poulsen’s younger daughter, Cassie, is 3.

The money from sponsors of the 10K walk will go into research, said Shawn

Dracoules, spokeswoman for the Cystic Fibrosis Foundation. The walk,

titled “Great Strides,” is the foundation’s biggest national fund-raiser

every year.

“These events show us people care and give us a glimmer of hope for the

future,” Dracoules said. “Money buys science, and science buys life. And

every day we’re getting closer to finding a cure.”

The Poulsens are holding on to that hope -- to find a cure to the disease

that has changed their lives.

“We look at things differently now,” Megan Poulsen said. “Family comes

first. All the other trivial junk that happens every day, that’s not

important.

“Nothing else matters when you face the prospect of having a life taken

away from you.”

FYI:

The 10K Great Strides walk will begin at 9 a.m. May 20 at Bolsa Chica

State Beach. To sponsor Courtney for the walk, call the Poulsens at

985-0865. The donation deadline is May 19.

For more information about the walk, call the Cystic Fibrosis Foundation

at 938-1393 or visit the group’s Web site at https://www.cff.org .

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