This Gainsville mom wants to raise awareness of rare disease with upcoming walk at Wilshire Trail
Aug. 16—A Gainesville mother is calling for the community to come together to raise awareness for a rare disease that hits close to home.
In her home in Gainesville, Haley Queen, alongside her husband, Kevin, raise their two sons, 3-year-old Boyce and 22-month-old Julian, who were each diagnosed at age 1 with eosinophilic esophagitis, an allergic inflammatory disease that affects the esophagus.
EoE occurs when elevated levels of eosinophils, a type of white blood cell, are in the esophagus, causing an allergic reaction to certain foods and leading to difficulty swallowing, pain and vomiting. Significant allergies to multiple foods are associated with the disease, which is most common in White men.
However, Queen was no stranger to EoE. Years prior, her twin sister's son was diagnosed with the same disease.
"Because I had already walked this journey with my sister, I was sad for my children but overwhelmed with gratitude because they both weren't (diagnosed with) failure to thrive — they were growing and gaining weight and happy children," she said.
Both of her sons are in treatment. They have endoscopies every two years to see the inside lining of their esophagus and take honey mixed with steroids to help with inflammation.
"This is a very young disease in the medical world and so we don't know what the long-term effects of the treatment we're giving our children is, so that's my biggest concern and that's why I wanted to push for this," Queen said. "I'm kind of looking forward to being able to at least have a conversation with my 3-year-old about what this walk means and that it's for him."
The American Partnership for Eosinophilic Disorders advocates and raises awareness for eosinophil-associated diseases and is hosting a virtual walk and fundraiser for its 20th anniversary on Sunday, Aug. 22.
Registration for the walk is $10 per person and can be found at apfed.org/walk. All proceeds go toward the partnership's HOPE on the Horizon Research Program to fund research into the disease.
Queen is organizing an in-person walk that day at 4 p.m. at Wilshire Trails in Gainesville. Masks and social distancing are encouraged.
Since magenta is the color representing EoE, she will be holding magenta balloons to ensure everyone finds their way to the meeting point for the mile-long walk.
"I just had this vision of the community being able to see raising awareness and money at the same time, but mainly awareness," she said.
Awareness walk
What: Walk to raise awareness for eosinophilic esophagitis
When: 4 p.m. Aug. 22
Where: 849 Wilshire Road, Gainesville
