Campton event to raise awareness for rare disorder

Zach Fincher was only four months old when his parents began to notice his abnormal reaction to food.

He couldn't keep down formula or cereal, and was developing frequent colds and ear infections. As new foods were introduced, the symptoms only worsened.

"He just became this sickly child," said Zach's mother, Teresa Fincher of Campton Hills. "He would vomit five to six times a day. He was always coughing and wheezing."

It wasn't until after Zach's third birthday, and a battery of tests and prior diagnoses, that doctors settled on eosinophilic esophagitis, or EE - a rare and incurable allergic disorder that causes inflammation of the esophagus.

Zach, now 11, has learned to live with the condition. But he and his family hope to help others by supporting research efforts with a fundraiser Friday in Campton Hills.

The Mission Zach Attack 5K Run starts at 5:30 p.m. at Wasco Elementary School, 4N782 School Road, with proceeds benefiting the nonprofit Research for Eosiniphilic Disorders, co-founded by the Fincher family.

The event also will include a 1-mile walk, children's "fun runs," entertainment from the St. Charles East High School drill team, and awards. Several medical professionals familiar with EE will be on hand.

"We want to raise awareness," Fincher said. "Most people have no idea what EE is."

Dr. Amir Kagalwalla, co-director of the EE program at Children's Memorial Hospital in Chicago, said medical professionals are still trying to figure out what causes the condition, marked by a large buildup of white cells in the esophagus, which react to some foods with inflammation. But it's likely a combination of genetics and environmental factors, he said.

"A lot of us have become very adept at picking this disease up. Not only are we diagnosing it more, but its (presence is) on the rise," Kagalwalla said. "We've known about it for 15 years and, in 15 years, we've made a lot of strides."

Treatments range from steroids typically used to combat asthma to upper endoscopes, which measure reactions in the esophagus. Some patients, including Zach, have had success with diets that remove major foods, such as milk, eggs, and wheat, which are then reintroduced one by one through multiple endoscopes to determine which are safe.

Kagalwalla said he hopes research yields cheaper and less-invasive ways of keeping tabs on the condition, such as a blood test. Left untreated, he said, EE can eventually cause an inability to swallow.

"Parents need to be aware that, if your child is not gaining weight, having difficulty swallowing, or having upper abdominal pain, or chest pain, they need to be diagnosed and treated," he said.

For Zach, staying healthy means avoiding eggs and milk, among other products. But it hasn't stopped the fifth-grader from earning a black belt in martial arts, or playing soccer, his mother said.

"The only way he stays healthy is by staying so diligent about being on this diet," Fincher said. "But it can be hard for him to say to his friends, guys, I want to eat this but I can't."

For more information on EE or the fundraiser, visit www.rfed.org.