When it’s time to eat, 14-year-old Cristobal Serrano grabs a plastic pitcher and fills it from a jug of sterile water. He opens a can filled with white powder and gets a metal whisk. He mixes the ingredients to a chalky, milky liquid and then pours it into a little plastic bag.
The bag hooks to a pump and a thin plastic tube on a metal post with wheels. The white liquid moves through the tube into a port in his abdomen.
“It’s like a permanent straw,” he says. “It’s my leash.”
Cris is tethered to that line for 20 hours a day. But, he says, it used to be worse. He used to drink it, back when he still could eat certain foods. But having to drink it all day is one of the reasons he got the feeding tube.
It doesn’t taste like much, but after a swallow it creeps up the throat and lingers, heavy and thick.
Cris has Eosinophilic Esophagitis, a disease that causes an allergic reaction in the esophagus affecting his ability to eat most food. The allergic reaction causes vomiting and pain, and sometimes food gets stuck and has to be removed surgically.
As a further complication, Cris also has Gastroparesis, a condition that means part of his stomach is paralyzed.
All this means Cris will never get to eat a pizza, although he can eat potatoes, white rice and some varieties of candy. Cris will never get to belly flop from a 30-foot-high diving board into a swimming pool. He’ll never get to eat a hamburger from a drive-thru — all things he says he’d like to do.
Cris lives with his mom, dad and sister in a home between Hawthorne and Interlachen. He likes AC/DC and Black Sabbath. He wears a fedora and skipped the third grade. He’s planning on going to Interlachen High School this year.
Last year, he missed 75 days of school because of his health problems.
He carries the pole with his pump on it like a spear around the house. One time he busted out a light bulb.
“It’s a pain in the neck for him,” said his mother, Jodi Serrano.
“More like a pain in the stomach,” he answered.
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There is no known cause for Eosinophilic Esophagitis, except that some people are genetically predisposed to it, and there is no known cure, said Dr. Glenn T. Furuta, director of the
Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado and National Jewish Health.
In fact, Furuta said the disease wasn’t officially diagnosable until 2007, although doctors had presumed Cris had Eosinophilic Esophagitis ever since he was about 4.
His mom said they’ve been dealing with issues since Cris was a baby. He has nausea almost every day. When he has flares, he’ll get limb pain and lose his voice.
He has been to the hospital more times than he can remember, and sometimes his esophagus will swell up so bad it has to be reopened with a surgical procedure.
Furuta said it’s estimated the disease affects somewhere between one in 10,000 people and 10 in 10,000 people.
“Something as simple as a stomach bug or constipation will send him to the hospital,” Jodi Serrano said.
The hole in his stomach where the tube goes tries to close itself, so Cris has sticks of silver nitrate that he uses to remove excess skin that grows around it.
As for the future, Furuta is optimistic. Despite the lack of a cure and no preventative measures, the doctor said he’s on the front lines of research that is under way to find a cure.
“There’s an increasing amount of effort,” he said, adding that because the disease covers so many areas of health, different doctors are getting involved in the research. He said he knows the disease is troublesome for young children and wants to work toward a cure.
“We want to make sure that children can grow and develop in the best way possible,” he said, “but also balance the risk and benefits of treatment.”
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When Cris goes to school, he wears the pump in a backpack. He doesn’t go to the cafeteria with the other kids.
“I’m banned from the cafeteria,” he joked.
But he’s upbeat about it.
Cris uses the pump like a hall pass, he said. He’ll make his machine beep for fun sometimes – to get out of class.
The two things that cause the most trouble for him when the tube is in are the difficulty in sleeping and riding his bike. The line hangs low, and once it got caught in his bicycle’s spokes.
Because of Cris’ lack of food options, his mom has found creative ways to cook potatoes.
“You have to figure out a way to get something out of only one ingredient,” she said.
By the kitchen in his house, stacks of boxes with his formula almost hit the ceiling. There are baskets filled with all types of medicine.
There also is a cotton candy machine.
Cris sometimes crushes Dum Dums candy with a large rock and, using the cotton candy machine, creates one of the few edible concoctions he can tolerate. There’s no stick, but the candy comes out like stretched-out cotton balls.
He can eat Smarties, too, because “they have nothing in them.”
His mother just wishes the family could sit down to a normal dinner.
“I want them to come out with some pill or some medicine that’s going to let him sit down and eat,” she said. Sometimes she goes through a drive-thru, and he gets upset with her.
“I get hungry,” she said.
– Jon Silman (source: The Gainesville Sun)