Arlington Park fundraiser draws attention to rare disease
Nine-year-old Brett Grossman has hardly eaten a thing for a year. Because of a rare illness that makes him allergic to nearly all food, he lives on an all-liquid diet.
The amino acid drink he must consume is so nasty he refuses to drink it. He has it injected through a feeding tube into his stomach, five times a day.
Brett hopes to slowly add foods to his diet, but will have to deal with his condition, eosinophilic enteropathy, throughout his life - unless there is a cure or new treatment.
Brett and his family from Long Grove will attend a fundraiser Sunday, May 3, on opening weekend at Arlington Park, to raise money for research on eosinophilic disease. "One Tree Hill" child actor Jackson Brundage will be on hand to sign autographs and take pictures.
Eosinophilic disease is becoming more common worldwide. It was not recognized before 1995, but now is estimated to strike one in 10,000 children, more often in males, according to Dr. Barry Wershil, who treats the disease at Children's Memorial Hospital in Chicago.
The rarity of eosinophilic enteropathy means it can go undiagnosed for years, Research into the disease draws few funds from the federal government and is dependent on money raised by organizations like CURED (Campaign Urging Research for Eosinophilic Disease).
Eosinophilic enteropathy, or EE, occurs when the body produces too many eosinophils, a type of white blood cell. The result is chronic inflammation and tissue damage, according to CURED. The disease can cause severe internal pain, nausea, vomiting, choking and other symptoms. It is treatable, Wershil said, but the regimen of a liquid diet and steroids is almost as bad as the disease.
EE keeps patients from eating with friends, which is a big part of social life, so kids need a lot of support and understanding from their families and friends.
The fundraiser is run by CURED, created by Ellyn Kodroff of Buffalo Grove, whose 16-year-old daughter Jori suffers from the condition.
Jori, who was diagnosed in 2003 at age 10, could only eat three foods - peas, bananas and sweet potatoes - until she recently added broccoli, which was a big deal for her. Earlier this year, through the Make a Wish Foundation, Jori attended a filming of "One Tree Hill." She met and talked with stars Sophia Bush and Chad Michael Murray, got a piece of his wardrobe and autographed pictures, and found out what will happen on the show (but she's sworn to secrecy).
Jori lives as normal a life as possible, attending Stevenson High School, driving and dancing hip hop with the Fusion Dance Company.
"Hopefully I'll be able to keep trying new foods and adding them," she said. "Or hopefully they'll find a cure."
Bet on a Cure fundraiser
When: Noon to 5 p.m. Sunday, May 3
Where: Arlington Park Racecourse, 2200 W. Euclid Ave., Arlington Heights
Admission: $100 for adults and $50 for those under 21. Includes admission to Arlington Park, lunch, an open bar, silent auction and a chance to meet Jackson Brundage.
Tickets and information: curedfoundation.org