From Symptoms to T-Shirts: When A Daughter’s EoE Journey Inspires a Creative Mission

When Andrea and her husband welcomed their daughter into the world five years ago, she had no indication of the medical journey that lay ahead. Like many new parents, she delighted in her seemingly healthy, happy baby, unaware that those early moments of uncomplicated joy would soon give way to years of medical confusion, frustration, and advocacy.

Early Signs That Something Wasn’t Right

The first hints of trouble appeared when Zoe developed eczema on her face and arms as an infant. She also began consistently spitting up during feedings—not unusual for babies, but a sign that would later take on new significance. By age three, Zoe was regurgitating food regularly, yet surprisingly, she didn’t appear to be in pain. Even more perplexing for her doctors, Zoe continued to grow and thrive despite these concerning symptoms.

Like many parents navigating a child’s undiagnosed condition, Andrea and her husband found themselves in a cycle of medical appointments that yielded few answers. Their pediatrician initially prescribed an antacid for reflux. When that proved ineffective, they tried a proton pump inhibitor. Still, Zoe’s symptoms persisted.

The Search for Answers Intensifies

The situation became more alarming when Zoe began experiencing choking episodes at night and showed signs of constant inflammation. Andrea was now even more determined to find answers.

Their persistence led to a stool test for H. pylori, a celiac test, and a barium swallow test, which returned normal. When Zoe’s gastroenterologist suggested an endoscopy, Andrea and her husband hesitated, concerned about putting their young daughter through an invasive procedure.

Instead, they requested allergy testing, hoping this might provide answers. The initial test only checked for milk allergies, so when eliminating dairy from Zoe’s diet didn’t help, they pushed for comprehensive food allergen testing.

The results were surprising: Zoe was allergic to nearly everything—dairy, eggs, soy, corn, and more. The only silver lining was that she tested negative for environmental allergies.

Finally, a Diagnosis: Eosinophilic Esophagitis

With these test results in hand, Zoe’s allergist referred them back to the gastroenterologist. Finally, Andrea and her husband consented to the procedure, finally accepting that an endoscopy was necessary.

The results confirmed what they had begun to suspect: at just five years old, Zoe had eosinophilic esophagitis (EoE). “Getting the diagnosis was a relief,” Andrea recalls, “because finally we had a name for what Zoe was experiencing.” The gastroenterologist referred them to the EoE Clinic at Phoenix Children’s Hospital.

The Treatment Journey: Trials and Triumphs

With a diagnosis in hand, Zoe began treatment with steroids to reduce inflammation in her esophagus. The path wasn’t straightforward—initially, the medication didn’t seem to work, and Zoe continued reacting to trigger foods. But the family stayed the course, and eventually, Zoe went into remission.

The reprieve was temporary. The family chose to try the 2-food elimination diet, hoping that they could identify the foods that were Zoe’s triggers. Instead, her symptoms returned, worse than before. A second endoscopy revealed damage to Zoe’s esophagus, confirming their observations.

“Our hope is that over time, Zoe won’t need to depend on medication,” Andrea explains. “Instead, she’ll learn to identify and avoid her trigger foods. But that brings us to our next challenge: nutrition.”

The Ongoing Nutritional Challenge

Today, Andrea’s primary concern is ensuring Zoe receives adequate nutrition despite her extensive food restrictions.

“How do you provide complete nutrition when so many foods are off-limits?” Andrea asks. “We’ve consulted several nutritionists locally but haven’t found satisfactory guidance on navigating these dietary challenges.”

Andrea believes nutritional monitoring should be more integral to EoE treatment protocols. While she values Zoe’s care at the EoE clinic, she feels the nutritional support aspect often falls short of what families need when navigating complex elimination diets. “There should be a more comprehensive approach,” Andrea explains, “with regular testing for nutritional deficiencies, especially for critical nutrients like calcium when dairy is eliminated.”

She suggests that better communication between specialists and nutritionists could create a more closed-loop system, including satisfaction surveys about the nutritional guidance families receive. “What would really help,” Andrea adds, “is having practical resources like sample menus, solutions for typical challenges, and clearer guidance on supplementation. Nutritionists should play a central role in the EoE treatment team, especially when families implement extensive dietary restrictions for growing children.”

“It feels like once you get an EoE diagnosis and treatment plan, the nutritional aspect is all on you,” Andrea explains. “It can become really challenging as a parent to manage adequate nutrition when doing a six-food elimination diet, for example. If you do get to see a nutritionist, they may not be adequately equipped to support you with EoE-specific guidance, and you can end up with too many open questions on top of everything else you have to manage for your child. For a growing child, having a solid nutritional plan isn’t optional, it’s essential.”

Finding Support Through APFED

Like many parents of children with rare or chronic conditions, Andrea is working to become an expert by necessity, educating herself about EoE to better advocate for Zoe’s care. Her initial research led her to APFED.

“Finding APFED through a Google search was a turning point,” Andrea shares. “Their webinars with medical experts have been invaluable. Each specialist offers different perspectives on the disease and shares what they’ve found helpful in diagnosing and treating patients.”

Andrea also follows APFED’s Facebook page to stay updated on new programs and research developments. “Having access to the latest information helps me feel more confident in advocating for Zoe,” she says.

Giving Back: Andrea’s Creative Contribution

Despite the challenges they face, Andrea has found a meaningful way to contribute to the EoE community. She has designed two EoE awareness T-shirts now available on her Etsy shop.

During May, to help raise EoE awareness, 40% of proceeds from these t-shirt sales will be donated to APFED to support patient education initiatives. Beginning in June, they’ll continue to donate 15% of sales to support APFED’s educational programming.

To support Zoe and APFED, visit Andrea’s Etsy Shop to purchase an EoE Awareness t-shirt. During May, 40% of T-shirt sales will be donated to APFED, with 15% continuing to support APFED’s educational programming thereafter.