A Mother’s Fight for Answers: Navigating EoE Diagnosis and Care

As told by Sarah, mother of two

Our EoE journey began from the very start of my son’s life. Born three weeks premature, he faced immediate gastrointestinal challenges with severe jaundice and failure to thrive, followed by an E. coli infection and reflux. From his first days, eating was an ordeal—taking almost an hour to drink even a few ounces.

Our pediatrician continuously minimized the reflux and feeding difficulties, attributing everything to his “rough start” and suggesting he was simply exhausted. Despite starting feeding therapy as an infant and being on a PPI from birth until age 3.5, his eating struggles persisted.

What frustrated me most was that he wasn’t a picky eater when he could manage to eat. At age 3, he enjoyed buffalo wings and all types of flavors and cuisines—when he could get them down. But by age 4, mealtimes became hour-long ordeals. I noticed he was “tossing food” toward the back of his throat, trying to make swallowing easier. He was eating smaller and smaller amounts, and without extensive support and encouragement, he was dropping weight. Another round of feeding therapy ensued.

Families like Sarah’s need support—and you can help.

Stories like these remind us why APFED’s work is so critical. Every day, families struggle to find answers, navigate diagnoses, and access the care their children desperately need. Your year-end gift can contribute to scientific breakthroughs in eosinophilic disease research.

Make an impact before December 31st:

• Donate online at https://apfed.org/donate
• Explore more giving options on our Ways to Give page, including donor-advised funds, cryptocurrency, or stock donations
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Every gift—no matter the size—helps families find hope and healing.