Editor's note: Brian Kratzer is the director of photography at the Missourian. Read Executive Editor Tom Warhover's disclosure of how this story was handled.
COLUMBIA — On every first star, every fallen eyelash, every penny in a fountain, Renee Martin-Kratzer's oldest daughter, Kedzie, makes the same wish — that she could eat food.
She has made this wish for three years.
Kedzie Kratzer, 8, and her three younger siblings, Zoe, Owen and Zackary, all have eosinophilic disorders, which are unusual chronic digestive disorders that cause the body to attack food. The children can't eat food and subsist on a diet of ice, water, sugar and amino acid formula.
An increasing number of people are being diagnosed with eosinophilic (ee-uh-sin-uh-FIL-ik) disorders, but there's still a lack of medical knowledge. Martin-Kratzer and her husband, Brian Kratzer, are hosting a fundraiser called Smiles for CURED this month at MU. They hope, most of all, that the fundraiser will raise awareness about the disorders.
Being brushed off
When Martin-Kratzer first brought Zoe, 4, to the doctor as an infant, she felt crazy for thinking her daughter could be allergic to everything she ate. Zoe would scream all night and had mysterious rashes, which doctors told her were just baby pimples.
“I had such difficulty in getting a doctor to listen to me. I felt like I was being brushed off,” Martin-Kratzer said.
It wasn’t until she took her daughter to National Jewish Health, a hospital in Denver, Colo., that a doctor recognized the symptoms.
“That was the first time we even heard the words eosinophillic disorder,” she said.
An eosinophil is a type of white blood cell. Everyone has them, but people with eosinophilic disorders have unusually high levels, said Matthew Bechtold, a gastroenterologist at University Hospital.
In this disorder, food or airborne allergens cause the eosinophils to become active and attack one or multiple parts of the body by releasing toxins, which cause swelling, Bechtold said. The area the eosinophils attack determines the type of disorder.
Kedzie and Zoe have eosinophilic esophagitis, which affects the esophagus. Owen and Zackary, 21-month-old twins, have eosinophilic gastroenteritis, which attacks the stomach and intestines.
“Food to them is poison. It makes me sad that I can’t bake them a cake or we can’t make sugar cookies together, but if I gave in, then I might as well hand them some cleaner to eat,” Martin-Kratzer said.
The disorder, which occurs in both adults and children, causes chest pain, nausea, abdominal pain and choking, Bechtold said. Leg pain is also now being recognized as a symptom in children, but doctors can't explain it. When Kedzie went trick-or-treating on Halloween, she could barely walk around the block.
There is some genetic explanation for eosinophilic disorders, according to the Children’s Hospital of Philadelphia, which has a center for pediatric eosinophilic disorders. But when Martin-Kratzer was thinking about having another baby after Zoe, doctors told her there was less than a 10 percent chance the baby would have the disorder.
“They said, ‘Don’t even make it a part of your decision’,” she said. When Martin-Kratzer found out she was pregnant with twins, she thought it was a sign she was going to have two healthy babies.
Zackary was born with red splotches on his face, and in two months both babies were reacting to breast milk. The Kratzers were shocked to find the twins had eosinophilic disorders and even more shocked that it was a different type than their daughters’ disorder.
'Noneaters in an eating world'
Treating eosinophilic disorders is difficult. They are often caused by food allergies, but an allergen test cannot pinpoint the causative food, according to the Children’s Hospital of Philadelphia.
As babies, Zoe, Owen and Zackary all started on an elemental diet, which is complete food elimination and a diet of a special amino acid formula. The formula is nutritionally complete and contains proteins that are already broken down so the body does not have to digest them. The three siblings have had no symptoms on the elemental diet.
Martin-Kratzer said she and Kratzer wanted Kedzie to try other treatments before going straight to an elemental diet because she was older when she was diagnosed. However, Kedzie has gone through a series of treatments and still experiences symptoms, even on an elemental diet.
“It was so much harder to make the switch with an 8-year-old than a baby. To suddenly become a noneater in an eating world was really hard for all of us,” Martin-Kratzer said.
It was an especially difficult switch because the formula tastes disgusting, she said. She tried one that smelled like vanilla, but it tasted “pungent.” And it’s expensive. Each can is $35 and they go through about three cans a day.
The disorder is not life-threatening, but the children are unlikely to outgrow it. Martin-Kratzer’s goal is to keep her children well enough to live a happy life.
Living with eosinophilic disorders
Even with this challenge, Martin-Kratzer said her children are thriving and happy. They do not have family mealtimes; the couple usually eat later at night after the children go to bed. “It’s really changed our life, in ways I haven’t even thought about,” Martin-Kratzer said.
But the family spends mealtimes doing other things together, like playing board games or going for walks. Martin-Kratzer thinks of that as the silver lining.
On birthdays, she has made her children cakes of flowers, lollipops or ice. A favorite family treat is going to Sonic and ordering ice. Kedzie has made a list of the foods she would eat first if she could, and at the top of the list is an ice cream concoction from Sonic.
Once in awhile, the "eosinophilic esophagitis fairy" visits their home and drops off toys. The morning after Halloween, the children's trick-or-treat bags had been emptied of candy and filled with toys instead. Sometimes, the fairy also delivers toys if Kedzie and Zoe are good about drinking their formula.
“I’d rather have food than toys,” Kedzie said.
At first, Martin-Kratzer did not tell people about her children's disease, but when Kedzie started drinking her formula outside of the lunchroom at school, she changed her mind.
“I realized it’s way better to tell people," Martin-Kratzer said. "No child should feel embarrassed of a disease."
Smiles for CURED fundraiser
The Smiles for CURED fundraiser will be all day Nov. 5, 6 and 13 in Lee Hills Hall in room 101. For 30 minutes, families or groups of friends can have as many pictures taken as they want by Kratzer, who is a professional photographer and teaches photography in MU's School of Journalism. Props will be available for the shoots.
The pictures will be made available on a CD and Kodak gallery one week after the photo shoot. The suggested donation is $100.
Martin-Kratzer and Kratzer have hosted two previous fundraisers to raise awareness for eosinophilic disorders when they lived in Florida and raised about $10,000 total. They have no set goal for this upcoming fundraiser. Fourteen groups have signed up so far.
All of the money will be donated to the CURED foundation, which gives 100 percent of funds directly to doctors for research. To sign up for a photo session, call Martin-Kratzer at (573) 356-2346 or email her at email@example.com