A mother's love transformed into action
Published: Tuesday, January 27, 2009 at 8:10 p.m.
Last Modified: Tuesday, January 27, 2009 at 8:10 p.m.
There's No End to What Brian and Renee Martin Kratzer's Two Active, Happy Girls Can Do – Except Eat Regular Food.
Here's One Family's Story Of Confronting a Rare and Frustrating Disease With Optimism and Creativity
By Renee Martin Kratzer
As I rummagedthrough the cabinet in search of an Elmo cake pan, I chastised myself for not feeling excited about my daughter's upcoming second birthday. But thinking about the cake only made me bitter.
Instead of using the mold to bake a treat that Zoe would devour with abandon, I would fill it with water to create a flavorless block of ice. This "ice cake" highlighted one more way that her disease robs her from a normal life.
Zoe has eosinophilic esophagitis, a rare disease that causes her body to have improper responses to food proteins. Every time she eats, her body sends out a type of white blood cell to attack the food protein as if it were a parasite. Zoe's current treatment involves avoiding all food – no juice, no snack, no meals. Only water, ice and a special amino acid formula.
This is no way to live. Zoe wants to eat. We desperately want Zoe to eat. So as I sat there in the midst of my own pity party, I knew that I needed to snap out of it. I wanted to put my angst into action. And then the idea hit me – my husband and I should hold a fundraiser in honor of her birthday with all funds going toward esosinophilic research. That way, I could move from simply hoping that she'd have a better future to actively trying to do something about it. Plus, the need for more research money is real.
Although there is no accurate count of the number of children in the U.S. with EE, doctors estimate that about 1 in 3,000 children have it. Because it's a rare disease, few federal funds are given for research. This is frustrating because the only way to find a cure is through research, which is expensive.
When you are handed an EE diagnosis, you enter the world of the unknown. Doctors don't know what causes the disease, the treatment options are limited and the only way to diagnose and monitor EE is through multiple endoscopies with biopsies. Figuring out what triggers the disease is a guessing game because the typical allergy tests are for immediate allergies, such as life-threatening peanut allergies. In EE, patients have delayed allergic reactions that are often caused by food or environmental allergens. So you try make an educated guess to identify the triggers for your child so that you can avoid them and put the disease in remission. But it's a chronic disease that is not outgrown.
Looking back, I should have been devastated after receiving Zoe's diagnosis when she was 14 months old. But after months of her screaming in agony, I felt desperate for answers. Finally, I had a name for the madness. I spent countless hours scouring the medical literature; I joined online support groups; and I attended a conference and listened to presentations by leading researchers in the field. The knowledge empowered me, but I still couldn't help Zoe's body stop reacting to food. We tried the recommended treatment of following a strict elimination diet, but it didn't work. We then added medication. That didn't work either. So we chose the extreme measure of removing all food and replacing it with an amino acid formula.
Within a week, Zoe was free of rashes and sleeping through the night. At first, I took comfort knowing that my child was no longer in physical pain, but there is an emotional aspect to this disease that can't be ignored.
Denying Zoe the food she wants goes against the laws of motherhood. The unfairness is compounded by the fact that the rest of the family needs to eat to survive. After weeks of eating in shifts so that Zoe wouldn't see us, we had her join us at the table with her shaved ice, formula and water. Eating is a social activity, and we didn't want to exclude her. It's been over a year, and I'm proud of how my family has adapted.
Trying to tell others that my active, happy toddler has this wacky illness has been a surprising challenge. After receiving the diagnosis, a relative questioned if this was a real disease and made veiled accusations that I was cruel to not let her eat. Shocked and hurt, I decided that I could avoid future exasperating exchanges by staying silent. Coping with the disease was already exhausting; I didn't need the added burden of trying to convince others that it's real.
As the fundraiser quickly approached, I realized that my silence would need to be broken if I wanted people to attend. I wavered. Would Zoe become known as "the girl who can't eat food?" I would rather celebrate all the things she can do instead of one thing that she cannot. I overcame my reluctance by focusing on how much easier her life would be if she could eat just a single food.
Called "Smiles for Zoe," the fundraiser took advantage of my husband's talents as a photojournalist. Families arrived to have their portraits taken. We raised $5,800 for research, and the outpouring of concern was overwhelming. The fundraiser was a turning point for me because I realized that I would no longer let Zoe's hidden illness remain a secret. I wanted to speak out in the hopes of raising awareness.
Now that I've found my voice in educating others about this disease, I need to figure out when to speak up. On Zoe's birthday, my 5-year-old, Kedzie, had an endoscopy because of the classic symptom of feeling like food was stuck in her throat. I was disappointed but not surprised to find out that she also has EE. She already avoided peanuts and sesame because of anaphylactic allergies, but now she had to remove soy, dairy, wheat, eggs, fish/shellfish and corn from her diet as well.
Most adults would balk at these extreme limitations, but Kedzie has taken it in stride. Still, social situations can be difficult. A recent school party included an "activity" that consisted of the children slathering frosting on cookies while guzzling hot cocoa topped with whipped cream. Kedzie sat inches from her friends and watched as they relished every bite. The look of disappointment on her face crushed me. I was on the planning committee, and I had contemplated suggesting an alternative activity, but asking others to consider your child's limitations can be difficult. All children shouldn't have to sacrifice for the sake of one, plus she truly does need to know how to handle these situations. But in this case, I think I failed her. What bothered me the most was that she hid her "safe" candy under the table. When I asked about this, Kedzie said, "I'm embarrassed. I don't want them to know I can't have that food." No child should ever feel ashamed for having a disease. She needed an attitude adjustment.
A few weeks later at a birthday party, I watched with concern as she once again hid her "safe" treat during cake time. The other girls noticed her empty plate. "Why aren't you allowed to eat cake?" one of them asked. Kedzie looked uncomfortable, so I jumped in to explain that she is allergic to many foods and has to eat only safe food like her candy. The girls understood this oversimplified response and began talking about their own allergies to cats or grass. Suddenly, Kedzie realized she wasn't so different after all, confirming to me that educating others could help her feel better about herself.
Every family faces challenges, and ours just happens to revolve around food. We don't want pity because we know that our children can do many things that others with different diseases cannot – they are both in gymnastics, they love to shake their booties to music, and they are curious kids who love to learn. They just can't throw open a cupboard and eat whatever they want. We are managing just fine, but don't mistake coping with contentment. I want a cure.
We will repeat the fundraiser next year in the hopes of raising additional funds. I will also be on the lookout for the perfect cake pan to make another ice sculpture. It turns out that a giant frozen Elmo head served with enthusiasm can be the highlight of a party. There truly is more to life than food.
Renee Martin Kratzer is an assistant professor in journalism at the University of Florida. She received her doctorate in journalism from the University of Missouri after working professionally as a designer and editor.
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