A walk of courage
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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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