FAMILY BATTLES ILLNESS
Locals work to raise awareness of CF
By Kelly Griffith news@bullardnews.com

Evan sits for a photo between his older brother and sister, Ethan and Erin.

Evan Bell describe himself as the boy with long hair. The long strands of red mixed with blonde sit on his shoulders and his bangs are only short enough to reveal a string of freckles along his cheeks and the bridge of his nose.

Like most other eight-yearolds Evan enjoys watching television, swimming, as well as playing sports such as soccer and basketball.

But unlike many other eight-year-olds attending Bullard elementary, Evan is faced with the challenge of battling Cystic Fibroses (CF).

According to the Cystic Fibroses Foundation

CF is an inherited chronic disease that affects about 30,000 children and adults in the United States. The disease affects the lungs and digestive system.

A defective gene and its protein product cause the body to produce a unusually thick and sticky mucus. The mucus clogs lungs may lead to lifethreatening lung infections. The mucus also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Looking at Evan, you couldn't tell that he's facing such challenges. Heather Bell, Evans mom said that her son is extremely health.

"Every three months we go see the doctor at the children's hospital in Dallas," Heather said. "They make Evan blow in a tube to test his lung function. He still has over 100 percent."

Heather also explained that the nurses are often surprised and impressed by his size. Evan has grown well over the normal height and weight of a child with CF.

Typical symptoms of CF are persistent coughing, at times with phlegm; frequent lung infections; wheezing; shortness of breath; poor growth and weight gain in spite of a good appetite.

Heather said her family has been blessed with good insurance that helps with the costly medicines that Evan needs.

That, along with a good diet and special care especially in the winter months, is what attributes to his good health.

Heather said many children are not as fortunate in health or insurance coverage and it's apparent in the waiting room of the children's hospital.

The CF Foundations statistics report that 1,000 new patients are diagnosed each year. More than 70 percent are diagnosed before age two.

Evan was 18 months when his mom received the news.

"I was on the phone with my best friend from college - who's a nurse - we were talking about Evan who had an ongoing cough and other symptoms she recognized," Heather said. "My friend said that I have him tested for CF.

"When we got off the phone I looked up CF and knew she was right."

Not long after the diagnosis was confirmed.

"It was very scary and I was upset at first," Heather said. "But when I got home to see my baby nothing had changed - he's still the same boy."

Heather calmed herself by thinking back to a friendship she had in high school.

"My friend had CF and she did everything I did. She wasn't held back by it." Heather said.

Evan doesn't seem held back by CF either. He participated in basketball last year and hopes to return to playing soccer this year.

The exercise is good for strengthening his lungs as well.

Evan also has a growing collection of Webkins, a plush pet that comes with a secret code to be entered in the Webkins Web site to create and care for a virtual version of the pet.

Evan cares for his Webkins pets like many other kids his age, though he'll admit to feeling different time to time.

"I wish I was like other kids," Evan said, "I don't like taking medicine."

Though there is not yet a cure the CF Foundation motto is "adding tomorrows to every day" and the CF Foundation's benefit walk, Great Strides motto is "taking steps to cure Cystic Fibrosis."

As it appears each is true, in the 1950's few children with CF lived to attend elementary school and now the predicted median age of survival is 38- years-old.

"Evan asked the other day, 'Mom am I going to die first?'" Heather said. "No you're going to bury me I answered."

Though each is a painful thought Heather said it's likely now.

"We have eternity - and this life is short - and it may have pain in it." Heather said. "But we are looking forward to eternity together."

The CF Foundation claims Great Strides is one of the country's most effective and efficient fund raising efforts. Since it's birth in 1989 the walk has raised more than $180 million to support vital research and care programs of the CF Foundation.

This year Great Strides has set a national fund raising goal of $36 million. Sept. 29, 2007 the Great Strides walk will be in Tyler at Bergfeld Park.

Check in will begin at 8:30 a.m. and the walk will begin at 9:30 a.m.

Heather is chairing the event and said that along with the walk through the Azalea District, there will be a clown, train ride and other festivities.

All of Evan's family will be there to participate as Evan's father, Conrad Bell, has his own team of walkers. Evans older brother Ethan and older sister Erin will be in attendance to show their support.

"We'd love to have people come out to walk or make a donation," Heather said. "We welcome every bit of help."

To find more information on Cystic Fibroses, register for the walk or make a donation you may visit the CF Foundations Web site at www.cff.org\greatstrides.