Rare illness makes boy unable to eat

By Lauren Janis
BCT staff writer

ljanis@phillyBurbs.com


EVESHAM - Susan Klosinski remembers the day vividly. It was Election
Day, Nov. 4, 2000, and she was rushing out the door to vote when the
phone rang.

She picked up the receiver, and her infant son's doctor spoke five
words that she and her husband are still grappling with nearly two
years later: Ari is allergic to everything.

"It's almost too big to comprehend," Klosinski said Monday. "I was in
shock. It was like, 'I hear what you're saying and I'll do what
you're asking, but how can he possibly be allergic to all food?' "

What seemed impossible was true. After watching their son lose weight
and vomit almost constantly for eight months, the first-time parents
finally had a diagnosis. It was eosinophilic esophagitis, a rare
gastrointestinal disorder they could hardly pronounce or comprehend.

Patients with eosinophilic esophagitis have an overabundance of a
certain type of white blood cells called eosinophils in the
esophagus, said Elizabeth Matsui, one of Ari's doctors, who works in
the pediatric allergy and immunology department at Johns Hopkins
Hospital in Baltimore, Md.

When Ari eats, the eosinophils attack, perceiving certain foods as
harmful invaders instead of beneficial nutrients, Matsui said.

Ari has life-threatening reactions to milk, eggs, wheat and beef, his
mother said. Other foods trigger choking, vomiting and inflammation
of the esophagus. As a result, his diet was reduced to hypo-
allergenic formula. It was the beginning of a difficult way of life.

"It was close to his first birthday and all of a sudden you realize
how different your kid is from all the other kids," Klosinski
said. "He's not going to eat cake."

The Klosinskis can't take their son to restaurants. They removed him
from day care, rarely take him to parties and try to have a lot of
play dates at their home on Apple Way.

As they adjust to the disease, they are helping their son adjust to
food. Matsui said as children with eosinophilic esophagitis age, they
often begin to tolerate an increasing number of foods.

"We started with baby foods," Klosinski said. "He failed squash, he
failed sweet potatoes, he failed pears. I thought I was going to have
a nervous breakdown. How on earth can you be allergic to a pear?"

Now 21/2 years old, Ari still relies on formula, but he can eat 10
foods: apples, corn, bananas, grapes, rice, carrots, apricots, plums,
pineapples and papayas. Earlier this week, the healthy-looking
toddler scrambled across the living room rug playing with his toy
trains. He is doing well, yet his mother remains a vigilant chief of
the food police and worries about the future.

"Right now he doesn't know about cookies and candy," she
said. "Someday he's going to get savvy and say, 'Hey, every other kid
has a chocolate cupcake.' Someday he'll become independent and
say, 'I'm going to ignore Mom's warning,' and he'll try to eat
something. It's very scary."

As she navigates through the disease, Klosinski reaches out to other
families through an organization called American Partnership for
Eosinphilic Disorders. On Sunday the group is sponsoring a walk in
Edison to raise awareness and understanding of the disease. Klosinski
will be walking.

"People have to work together," she said. "The important thing is
that we reach out to others and raise awareness and raise money for
research and education."

To participate in the walk or donate to the organization, go to
www.apfed.org or call the national headquarters in Texas at (281) 232-
9595.