Virginia Beach boy battles rare disorder

Posted at 11:06 PM, Sep 23, 2013
and last updated 2013-09-24 08:43:56-04

Virginia Beach, Va. - Three-year-old Ezekiel Caalim started breaking out in hives after feedings when he was around five-months-old.  Little did his parents know, it was the beginning of the rare and potentially deadly disorder, eosinophilic esophagitis.

"I didn't know what to do then," said his mother, Kristine Caalim, who explained that her son was having severe reactions to everything he ate.

"His face swells up, his throat swells up," she said.

Ezekiel's reactions to food also manifest on his skin in the form of severe rashes that cause him to itch and scratch all the time.

"He'll scratch until, you know, he won't stop if he bleeds," Caalim said.

Last year, before the family knew exactly what was causing Ezekiel's severe reactions, Caalim and her family took Ezekiel to Johns Hopkins in Baltimore.  Even though they did not have a referral, a doctor in the waiting room couldn't turn him away.  After several tests, doctors there diagnosed him with the disorder.

"[Ezekiel's] eosinophil white blood cells attack food like a virus or a parasite," she said.

According to Johns Hopkins researchers, only between one and four out of every 10,000 people in the United States have EOE.

"We've been going to Johns Hopkins almost every month, sometimes twice a month," she said. "He needs biopsies every three months."

Ezekiel gets most of his nutrition through formula administered through a feeding tube every four hours.  Even with such a restricted diet, his itching and scratching never goes away.  Neither does the rising cost of taking care of him.

"$2,400 a month," she said.  "That is travel expenses, the medications he takes, the feeding tube fluid that is left over after insurance."

"His name is Ezekiel and it means the Lord's strength," said Caalim.  "So, he's strong."

Caalim said doctors do not know if he'll grow out of the disorder. The family recently learned he's been approved to take part in a clinical study that will analyze his DNA. The trials begin in 2014.

For more about Ezekiel and his journey, check out his Facebook page.