Cystic fibrosis is not keeping this teen down

December 02, 2005|by TIFFANY ARNOLD

HAGERSTOWN - At first glance, a daily struggle for normalcy appears unlikely for Beth Heinen.

Beth, 13, is an attractive teenager - tall and slim with a striking smile.

She's a competitive cheerleader who likes the Backstreet Boys and listens to 50 Cent and Britney Spears. She spends hours on the phone with her girlfriends gushing about cute boys. She also has a boyfriend named Brian.

But Beth has cystic fibrosis, a terminal illness that causes the lungs to fill up with sticky fluid. The disease keeps her in and out of Johns Hopkins Children's Center, said her mother, Barbara Heinen. She can only go to school part time because of her illness, her mother said.

"She looks normal, but she's sick on the inside," said Barbara Heinen, a 36-year-old single mother. "She tries to do everything that other kids do, but even riding a bike is a task, but she fights. Every day, she fights."


In many ways, Beth has excelled. Her drawings of little gingerbread men, sketched while she was too sick to leave her hospital bed, were printed on silk ties sold at Jos. A. Bank Clothiers stores.

Her ties, which sell for $49.50, are part of the menswear store's "Miracle Collection X," featuring designs from 10 pediatric patients at Johns Hopkins.

Beth modeled her tie at the collection's official unveiling in Baltimore in November. She strolled the catwalk in glittery stilettos that lighted when she stamped her feet.

Patients were asked to draw their favorite things, said Kim Hoppe, associate director of the office of communications and public affairs at the Johns Hopkins Children's Center. The hospital chose 10 of the drawings.

Hoppe said 100 percent of the proceeds go to the children's center.

Beth, who lives in Hagerstown, said she decided to draw gingerbread men because they reminded her of the little gingerbread men that decorated her kitchen at home.

Beth was diagnosed with cystic fibrosis when she was 3 months old. As a baby, Beth wheezed so badly her mother said she sounded like a freight train. Doctors learned that it was cystic fibrosis and not asthma after they ran several tests, her mother said.

"As a parent, as a mother knowing that your child isn't going to outlive you, I just live day by day," Barbara Heinen said.

Cheerleading has become one of life's simple pleasures for Beth and her sister Hannah Heinen, 12.

Beth has been cheerleading competitively since she was 6. It started after she watched a friend compete, where she saw little girls "flying" and "stunting" in the air.

"I was thinking, maybe I could do cheerleading, maybe I could fly," Beth said.

Right now, Beth is trying to master the back handspring.

Cystic fibrosis is an incurable disease. The average life expectancy of those who have cystic fibrosis is between 32 and 45 years, according to the Duke University Medical Center.

Barbara Heinen said Beth has had a difficult time accepting the fact that she could die, but said she'd be happy if her daughter lived long enough to walk at her high school graduation.

"There's been a lot of times when doctors have said, 'There's nothing more we can do, it's up to her to fight this now,'" Barbara Heinen said. "You go to sleep wondering if you still have a daughter. But she always hangs on by a thread."

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