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'An unusual case'

Photo by Rachelle Klemme Cooper Reed rides his bike though the family's Wadena yard Tuesday afternoon. Reed has cystic fibrosis, a genetic disease for which there is no cure. However, quality of life has increased in past decades for people with this illness.1 / 2
Cooper Reed of Wadena, whose hobby is racing, shows his racing go-cart Tuesday afternoon.2 / 2

Cooper Reed is just another active elementary school student who likes go-karting, bike riding and kids jiu-jitsu. And, to his family's knowledge, he is the only person in Wadena County with cystic fibrosis.

"Most children are diagnosed before they are three. Cooper was not diagnosed 'til last year," his grandmother, Mary Brauch, said. "His was kind of an unusual case."

Cooper's father, William Reed, said Cooper grew up with some digestive problems, but went undiagnosed for a while. The family kept pursuing the mystery until March 2011 when they learned what the illness was.

"After so long, we kept on taking him back, and taking him back. Well then they finally did a genetics test and discovered that he had cystic fibrosis," William said.

Cystic fibrosis is an inherited chronic disease affecting the lungs and digestive system, according to the Cystic Fibrosis Foundation. With this disease, the body produces unusually thick mucus that clogs the lungs and obstructs the pancreas.

There is no cure for cystic fibrosis, but the quality and length of life for people with the illness has improved throughout the last few decades. The median predicted age of survival for a person with cystic fibrosis is into the late 30s, an improvement from the 1950s when few children with the illness lived long enough to attend elementary school.

The Cystic Fibrosis Foundation is a nonprofit supporting the development of drugs to fight the disease, improve the quality of life for cystic fibrosis patients and eventually find a cure, according to the organization's website.

Brauch said she is concerned about the general lack of awareness about this disease.

The family is getting ready to participate in at least two cystic fibrosis fundraising and awareness events in September.

Zion Free Lutheran Church in Wadena will host an ice cream social and fundraiser at noon Sept. 9.

On Sept. 15, several family members and friends will participate in the Great Strides Walk in Duluth. The 3K walk will raise money for the Cystic Fibrosis Foundation.

William said this is the first time the family has been to the walkathon - and the first time he has been to a benefit walk of any sort.

William's girlfriend, Ann Getchell, approached local businesses that later agreed to donate to the walkathon.

William said cystic fibrosis tests became mandatory several years ago, but Cooper - entering fourth grade - was just old enough to slip through the cracks.

"Most cases are documented now," he said.

Cooper goes through treatments every day, including a nebulizer and medications - many of which have to be ordered ahead of time because they are not available in Wadena.

"There is no cure for it, but the treatments are ongoing and pretty difficult for the family to deal with on a daily basis," Brauch said.

Additionally, Cooper has much higher caloric needs, and struggles to keep his weight.

"He's supposed to have close to 6,000 calories a day," William said.

William said Cooper is an active kid who participates in the kids' class at S.T.O.M.P. MMA and travels around the blocks of his southeast Wadena neighborhood.

"Everybody pretty much knows him," William said.

Cystic fibrosis is genetic, not contagious, and Cooper can participate in the community, although precautions have to be taken for him to avoid getting an infection.

Cooper participates in go-kart racing in Alexandria, where a fundraiser benefit for cystic fibrosis was held in early August. Ultimately, he is like any other boy who likes playing soccer, roller blading, enjoying street hockey and hanging out with friends.