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Every Day's a Challenge for Girl With Malady
The Galloway, N.J., fifth-grader is curled up on the couch, playing with a doll and whispering into her mother's ear -- a habit from when she first began losing her hearing. Eating certain foods triggered the temporary hearing loss, a medical phenomenon doctors still cannot explain. Though her hearing has returned, the old habit remains.
She does not appear to be unhealthy at first glance -- just a 10-year-old showing off a doll. The only unusual feature of the toy is a tube that runs out of its stomach and into a cardboard model pump, just like the one she has.
A.J. Frieze, who's taking seven different medications to manage her pain, suffers from a group of disorders called Eosinophilic Gastrointestinal Disorders. In short, her body thinks that most foods are foreign invaders, and must be attacked. She can only eat two things without complications: rice and apples. The rest of the protein her body needs she gets through a tube inserted near her naval.
She carries a backpack with her everywhere. Unlike most 10-year-olds, she keeps it not as a fashion statement, but because it houses a pump that connects to the tube in her small intestine, slowly feeding her amino acids at all times. The entire process bypasses her stomach.
A.J.'s fourth-grade year at Galloway Community Charter School ended abruptly after her condition worsened last April. She was flown to the Cincinnati Children's Hospital Medical Center, home of the leading research center on EGID, and has been in and out of the hospital since.
"We had to get to a point where she could cope, so that she could go back to school," said her mother, Phyllis Zuckerman-Frieze. A.J. took classes in the Cincinnati hospital during her stay, and started fifth grade back in Galloway on Sept. 19.
But A.J. -- she uses the initials to her full name -- doesn't let her condition keep her from having fun. She belongs to Congregation Beth Israel in Northfield, N.J.
She also plays softball in a fall league; she scored two runs in her last game, and covers second base.
"I'm good," she says, referring to the sport.
Her teammates didn't even know she was sick until they found out she was in the hospital. She can unhook her tube while she plays softball, attends gym class or goes to the beach.
A.J.'s face lights up when she talks about the friends she met at conferences for children with EGID. She flips through a binder, pointing to photos of other kids.
A nonprofit group called the American Partnership for Eosinophilic Disorders holds the conferences each year, where children can meet and spend time together. Last year's was in Philadelphia; the next will be in Utah.
Last year, the family -- which includes A.J.'s mom, her father, Larry Frieze, and her older sister Remi -- went to Styer's Orchard in Bucks County during Rosh Hashanah. "This was something she could do, and partake in, and just feel part of," said her mother. They all picked apples, and A.J. was able to eat them to celebrate the holiday.
Though A.J. has learned to live with her condition, she says she looks forward to any medical advances that would let her eat an assortment of foods. A drug trial is currently being conducted for anti-IL-7, a possible cure, but A.J. can't enter the program until she's 12.
Her mother is hoping by then, A.J. will be approved for treatment: "There's definitely things going on out there, and [A.J.] has her hopes pinned on them."
For now, A.J. continues to go to school with her backpack, just like all the other students.
The only difference is the tiny, translucent tube -- her lifeline, for now -- snaking out from her backpack and tucked away under her shirt.