Diagnosed with eosinophilic esophagitis (EoE) when he was 3 years old, Aiden Milmoe has struggled over the years with difficulty swallowing, abdominal pain and vomiting.
Living with the allergic condition hasn’t been easy, but as a patient at our Cincinnati Center for Eosinophilic Disorders (CCED), Aiden, 16, wants to do his part in hopes that he and other patients can live better lives.
That’s why he’s currently enrolled in a clinical trial at Cincinnati Children’s focused on a new medication for EoE. As part of the study, Aiden self-injects medication weekly and travels to Cincinnati Children’s each month for infusions and monitoring.
The initial study phase is expected to last 24 weeks.
Besides the side effects of EoE, Aiden has struggled with many treatment plans and tried several therapies— from swallowed steroids in the form of both Pulmicort and fluticasone, to undergoing an elimination diet in which foods are removed and then added back in gradually one at a time – but he hopes this trial may bring about better future treatments and outcomes.
“It’s important,” he says while discussing his involvement in the research. “There were people and kids who trialed Flovent in a clinical trial a long time ago so that, eventually, it could be something to help me. And now I’m able to be in this trial with the hope that maybe this will one day be able to help other kids like me too.”
As such, Aiden views his trips to Cincinnati a little differently now. He and his father, Michael, have grown accustomed to the trip to Cincinnati, driving from their home located 40 miles west of Chicago. But his role in the clinical trial now provides an even larger purpose.
He and his father, Michael, hope the new research efforts will make a difference in not only Aiden, but also other EoE patients and their day-to-day lives.
“There’s hope. It’s exciting to know that there is a possibility for new treatments that will help to expand kids’ diets,” said Michael. “It’s progress.”
CCED director Marc Rothenberg agrees – each study is progress in action.
“Each study and each patient who participates brings us one step closer to a better treatment and eventual cure," he said.
Today, Aiden avoids milk, wheat, soy, shellfish, and peanuts. He reads labels to check for ingredients and has learned how to take personal responsibility for his daily eating habits and ongoing diet.
Both father and son understand that any breakthroughs will require time and patience and continued research efforts before any new treatments become a reality.
For now, Aiden is focused on taking everything day by day and enjoying as normal a life as possible as an EoE patient. Michael is familiar with his son’s struggle and will continue to do anything he can for Aiden in hopes of a better life.
“There’s no doubt that it’s hard. It’s a whole lifestyle change. It’s expensive. Allergy-friendly foods are costly. You have to be diligent, but it’s worth it,” said Michael. “It’s for your child, every sacrifice you make. It’s twice as hard for your child to live with the disease. Seeing them improve makes it all worth it.”
Read stories of hope and inspiration from patients and families who were cared for by the Cincinnati Center for Eosinophilic Disorders.
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