HOOVER, Alabama -- Victoria DeLano glances toward a room adjacent to the kitchen in her Hoover home and gestures toward the door that should lead into the dining room.

Instead of using the room for family meals, DeLano and her husband, Jim, have converted the space into storage for medical supplies for her son, James, and a spot for her two children's art projects.

"We don't eat in there, so it might as well be a fun place for the kids," she said, without a twinge of regret in her voice.

They don't have a dining room because James, who is 6, lives with a disease called eosinophilic esophagitis, which basically makes him allergic to nearly every food.

Food causes severe pain in his chest and stomach, vomiting and gagging. His nourishment comes from a formula he receives through a stomach pump. His mother said it "tastes like vomit." James needs 60 ounces per day. Water is the only thing he takes by mouth.

Spend a few minutes with James and you realize he's much like any 6-year-old. He loves to play with Legos, is a "Star Wars" fan, enjoys reading and is a kindergarten student at South Shades Crest Elementary School. He plays for the Braves in Upward Baseball and is proud he received two consecutive stars for his batting efforts.

But he's also living with a disease that has no cure.

"It's very, very hard for families, teachers and the public to look at a child and be able to understand that this child who looks well on the outside will be sick on the inside if they eat something they shouldn't," said Dr. Wendy Book, president of the American Partnership for Eosinophilic Disorders. "If somebody eats peanuts and breaks out in hives, you can see that. If somebody has an allergy and they get eczema on their skin, you can see it. But this is inside, so that makes it very difficult for people to understand it."

The DeLanos certainly had no understanding of the disease, even though, in hindsight, James showed signs from an early age.

"As first-time parents, we thought it's normal for a baby to spit up," Victoria DeLano said. "We didn't know until we had our daughter that it wasn't normal for a baby to be projectile vomiting all the time. I just thought this was the way a baby was, and then we had our daughter and I thought 'Wow, something's wrong with her.'"

James was officially diagnosed with the illness soon after his fourth birthday. The family sought treatment at Cincinnati Children's Hospital Medical Center. James took steroids while waiting for four months to get an appointment but didn't respond well to the treatment.

He was immediately taken off the steroids in Cincinnati and went on an elimination diet. Wheat, dairy, soy, peanuts, all shellfish and eggs were stripped from his diet. He began drinking a formula to supplement his body but continued to be sick.

The family began seeing a another specialist in Greenville, S.C., because it was more convenient. In June of last year, James went on a diet that was strictly formula, fed directly to his stomach with a pump placed in his belly button.

Soon afterward, they began trials to see how he would react to different foods. One helping of white potatoes was enough to give James severe chest pains. He managed bananas for more than two weeks before a reaction, and then it took nearly five weeks for the symptoms to go away. He made it all the way through a trial with cauliflower, but an endoscopy revealed he was reacting negatively to the food. The only food that passed the test was broccoli.

Eventually, James returned solely to formula.

'Don't make me eat'

James has gone through many emotional stages during his ordeal, his mom said. When he was young, before diagnosis, he simply accepted that when he ate, he threw up. During the elimination diet, he became frustrated because he couldn't eat what other people were eating.

"He really started to hate food more and more and more," his mom said. "He was old enough to put two and two together. He could understand that 'I eat, and it makes me hurt.'"

She said that by the time he went strictly to the formula, James was begging "Please don't make me eat anymore."

Through it all, the DeLanos have found ways to keep life normal. One parent will often eat dinner with 4-year-old Amelia, who doesn't suffer from the disease, while the other parent plays with James in another room. At times, they will give James a "smelling plate" so he can smell the food and play with it.

At school, he spends lunch period in the library instead of being tempted by food in the cafeteria. At his birthday party, Victoria made James a frozen water treat similar to a Popsicle and had clear Kool-Aid frozen treats for the rest of the children. His birthday "cake" was a bunch of water balloons covered with shaving cream, and James was allowed to cut into the "cake" for fun.

The DeLanos are active in educating people about eosinophilic esophagitis and working to get funding to research what is a relatively young disease. They met with the staff of U.S. Rep. Spencer Bachus, R-Vestavia Hills, and Bachus then wrote "an amazing letter" to the National Institutes of Health, expressing his concern over lack of funding to research the disease, Victoria DeLano said.

Push for research

However, progress in researching the disease is still stagnant.

According to reports provided by NIH, $68 million is projected to be spent researching Crohn's disease in 2012 and $108 million studying Inflammatory Bowel Syndrome, yet eosinophilic disorders are not on the list. However, with growing awareness there has been more diagnosis of the disease in children and adults. An estimated one in 2,000 people suffer from the same disease James has, Book said.

"The more awareness there is, the more funds will be raised for research and the more researchers will be interested in the disease," said Book, whose son was diagnosed with eosinophilic gastroenteritis seven years ago. "Somewhere down the road, we'll have some treatments for these diseases."

For the DeLanos and other families dealing with the disease, the focus is on living with it.

"It's a lifelong process, and he's just started to be able to manage it," Jim DeLano said. "There's no pill, there's no shot that is going to make it go away. It's really trying to set him up to be able to manage the process. He's been a trooper through the whole thing."

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