Submitted photo Three-year-old Ben Sutter suffers from eosinophilic gastroenteritis, a disorder that causes white blood cells to attack the tissue in his gastrointestinal tract every time he eats. His grandfather, Herb Sutter of Germantown, recently organized a bike trip to raise money for research and promote awareness of the disease.

Ben Sutter, 3, cannot eat food. He lives on a formula of amino acids that is the consistency of Slim Fast and comes in small juice boxes. He drinks about three every meal.

For the first 400 days of his life, doctors could not understand why Ben would cry in pain every night, why his skin was covered with eczema, or why he broke out in hives and had diarrhea.

Finally, his parents, Cindi and Matthew Sutter of North Canton, Ohio, took him to the Cincinnati Children's Hospital Medical Center, where doctors diagnosed him with eosinophilic gastroenteritis, a disorder that causes white blood cells to attack the tissue in his gastrointestinal tract every time he eats.

Last week his grandfather, Herb Sutter, 61, of Germantown completed a five-day, 400-mile bike ride -- one mile for every day Ben went undiagnosed -- from the George Washington Bridge in New Jersey to Newport, Vt., to raise money and awareness of the disease.

Herb Sutter, his nephew Chris Hartmann, 44, of Mendham, N.J., and Hartmann's friend, Joe Hunt, 54, of New York City, biked from July 26-30.

The fund-raiser was initially Herb Sutter's idea. Sutter's wife, Norma, 61, said she was concerned at first, but soon got over it.

"As he trained, I just kind of let it go," she said. "He's always come back from his very long bike rides in Maryland. He's learned how to fix flat tires. He's in very good shape."

Herb Sutter said he biked 3,600 miles during the spring to prepare for the trip.

Proceeds from the fund-raiser will support the three-year-old American Partnership for Eosinophilic Disorders (APFED) organization, which is hoping to promote research and awareness about the often-misdiagnosed disease.

So far, from donations in Ohio, where Ben lives, and in Maryland, the Sutters have raised $2,000 for APFED, which spends about 80 percent of its budget on funding eosinophilic research.

Despite the 18-wheelers roaring past, the rain that pounded the riders on their second day of travel and the trek through the Green Mountains of Vermont, the trip came without too many unforeseen obstacles, Herb Sutter said.

"It was very enjoyable, sort of, aside from being tired," Sutter said.

He said he has biked long-distance for about 10 years. Hartmann also "spends a fair amount of time with the New York Bike Club," Sutter said.

The three men wore tight-fitting bike jerseys and snacked on high energy bars as they wound their road bikes along a path up the Hudson River, mostly following state highways.

They began their mornings with big breakfasts and took off at 6:30 a.m. to beat the heat, Herb Sutter said. After biking for six or seven hours, Sutter would call Ben's family in North Canton to say hello and to give Ben a chance to chart their progress on a map.

At the end of the trip in Vermont last Friday, Norma Sutter met them at their summer cottage. Ben's family joined them on Saturday.

Although Ben had to wait more than a year to get a correct diagnosis, he is one of the luckier ones, Cindi Sutter said. Kids with eosinophilic disorder wait an average of four years to get their diagnosis, she said.

"We're excited about the progress we're making," APFED President Beth Mays said. "But there are thousands and thousands [of people with the disorder] that we have yet to find. Almost everybody knows somebody who has reflux or allergies, and they're not doing well with their medication. ... You could have this disease and not realize it. It's termed as rare, but it's genuinely not."