Child inspires Wesley Chapel golf tournament
By Kyle LoJacono
“He was sick all the time,” Stephanie said. “After we’d feed him he would scream and spit up his food every time and he was not a happy baby. We took him to several doctors and changed his baby formula so many times and tested him for almost everything. We had no idea he had this until he was 4-years-old.”
That “this” turned out to be eosinophilic esophagitis (EE), which prevents Remington from eating any solid foods.
“I don’t really remember eating food,” Remington, 10, said. “I only really remember that I got bad chest pains. It feels like I was having a heart attack or something…It was sharp knife pains in my chest.”
To raise awareness about the disorder, the family is planning the seventh annual Remington Golf Tournament. The tournament will benefit American Partnership for Eosinophilic Disorders (APFED), a national nonprofit organization dedicated to raising awareness of EE and other related diseases.
The tournament starts at 1 p.m. May 1 at Lexington Oaks Golf Club, 26133 Lexington Oaks Blvd. in Wesley Chapel. The deadline to register is April 18. To sign up for the tournament, call Stephanie at (813) 997-2151.
Remington weighs only 60 pounds, which is light for a 10-year-old boy.
“He can’t eat anything solid,” Stephanie said. “Some people with EE can find some things they can eat, but Remington is in that small percent of people who can’t. He can only have this drink formula that has a lot of vitamins, minerals and the nutrition he needs.”
The formula has to be kept refrigerated and Remington has 12 to 13 of the 8-ounce drinks each day. Stephanie, who is a language arts teacher at Pine View Middle, said Remington sometimes gets so hungry at school that he drinks his entire daily supply before lunch. She keeps extras with her in case he needs more during the day.
Remington said the drinks taste like pineapple and orange when he first drinks them, but have a bad aftertaste.
“It’s really hard because it changed our entire lives,” Stephanie said. “People don’t realize how much of their lives involve food. We can’t go out to eat at restaurants. We still sit down and have dinner as a family and he has his drinks, but it has changed basically everything we do.”
According to APFED, Walls’ condition starts with an increase in a certain kind of white blood cells, called eosinophils, in the esophagus. Those blood cells attack any food that a person swallows and then continue to damage the esophagus.
“That’s what causes the pain,” Stephanie said. “It can cause scar tissue to build up and make is esophagus hard and unusable. It could cause him to need a feeding tube.”
APFED’s Web site, www.epfed.org, states common symptoms of EE include nausea, vomiting, diarrhea, abdominal and chest pain, difficulty swallowing, loss of appetite, anemia, difficulty sleeping, weight loss and stunted growth. The symptoms are not specific to EE and vary widely, so most people are misdiagnosed as having acid reflux or other diseases. There are no accurate estimation of how many people in the United States have EE.
While EE forces a drastic change in eating habits, no evidence has shown that it shortens a patient’s lifespan. Medications are available to reduce some of the symptoms of EE, but there is no cure.
“The medicines didn’t help Remington,” Stephanie said. “His condition got worse and spread to his small intestine. We knew his life was at risk, so I started looking online to see if I could find anything about what could be causing this. I came across the APFED Web site and was directed to Cincinnati Children’s Hospital Medical Center. They specialize in treating EE.”
The Walls travel to the Cincinnati hospital several times a year, which is difficult with Remington’s nutritional requirements.
“It has become tricky to travel with his drinks,” Stephanie said. “I usually send most of them ahead of us so that I know they’re waiting for us, but the airports don’t like us traveling with all the liquid. They usually want us to check them, but he needs to have them every couple hours and I’m always afraid they will get put on the wrong plane.”
Despite his hardships, Remington is still able to participate in sports.
“I play baseball and it’s my favorite sports,” Remington said. “It is a tradition in our family because my dad played in high school…I play second base, shortstop and catcher. I like playing second base the best because I get the most balls hit to me.”
Remington’s favorite baseball team is the Tampa Bay Rays and his favorite player is Carl Crawford. He said he would like to be a baseball player when he grows up.
“He’s a very determined kid,” Stephanie said. “He doesn’t want to be known for the disease. He’s a strong fellow and can show people that determination can take you a long way.”