2nd grader battles anti-food disease

By Chris Swords Betts

“Her body is attacking all food,” said Jacquette Brown, mother of Justice Brown, a Maricopa second-grader.

Justice was diagnosed with eosinophilic esophagitis (EoE), a chronic immune disease, at the age of 3.

Now 7, Justice will undergo an endoscopy and biopsy of her esophagus under general anesthesia every three to six months until her doctors can determine which foods, if any, she can eat.

This procedure is nothing new to Justice, who underwent her most recent endoscopy Dec. 12. Following the procedure, Justice’s doctor restricted her diet to only fresh fruits and some vegetables, and the hypoallergenic protein formula that gives her the nutrition lacking in her diet.

Brown said when she took Justice to the doctor for her chronic rashes, diarrhea, constipation, vomiting and flu-like symptoms, she was repeatedly dismissed as being a worried new mother.

“Finally, after years of getting the run around, I got fed up,” said Brown, who was living in Michigan with her family at the time. “We drove to Wisconsin and got the diagnosis.”

EoE causes a buildup of a type of white blood cell in the esophagus, due to reactions to food, other allergens or acid reflux. The buildup can lead to serious health problems, including difficulty swallowing, vomiting, food impaction and choking.

EoE was first identified about 20 years ago. According to the Children’s Hospital of Philadelphia, an estimated 1 in 1,500 children had EoE in 2012.

“She reacts to just the smell of food,” Brown said. “Her throat starts closing.”

Because of this, Justice can’t eat her lunch in the school cafeteria.

“My friends like to eat with me in the nurse’s office,” Justice said.

There is no cure for EoE.

“They go into remission,” Brown said. “It’s a back-and-forth thing. Some days are good days.”

Justice’s doctor will continue to eliminate foods from her diet until the results of her procedure come back clear.

Brown said there are some people who can only have formula and have gastronomy feeding tubes (G-Tubes) in place.

“We’re hoping she doesn’t have to have it,” Brown said. “Lots of people say that’s the best solution.”

Brown said Justice sometimes expresses a desire for a G-Tube, because of her distaste for the formula.

“It’s just a nasty, sweet taste,” said Wesley Brown, Justice’s father. “It doesn’t taste good at all.”

Despite both Browns working and having medical insurance through Wesley’s work, they are struggling to manage the cost and time constraints of Justice’s condition. On top of medical bills, the formula alone adds up to more than $650 per month. The Browns are hoping Wesley’s new insurance will cover a portion of this.

“We have medical bills mounting up,” Brown said. “We need to be in a position to cover this stuff. It’s getting out of control.”

The family was planning to take Justice to a specialist in Cincinnati, until they found Dr. Mark E. McOmber at Phoenix Children’s Hospital.

“It’s just been amazing since the first day,” Brown said. “He genuinely cares about her.”

 

gofundme.com/support-justice

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This story appears in the February issue of InMaricopa.