In honor of National Eosinophil Awareness Week, we’re resharing Paisley’s journey with eosinophilic esophagitis (EoE), from diagnosis to treatment. It’s a powerful patient story of raising EoE awareness from our 2023 newsletter archives. We thank Ali Platt for sharing her daughter Paisley’s story with APFED and for providing an update on Paisley’s journey with EoE today.
In March 2019, Paisley Kaye was born. As first-time parents, we couldn’t have been more elated. Her first year of life was somewhat normal. Any concerns we had were dismissed as “normal baby things.”
As time went on, symptoms evolved as a series of odd events. For example, Paisley was a pacifier lover. One day in January, she suddenly could not put it in her mouth without violently gagging. Her beloved cup of cow’s milk now caused severe flushing on her cheeks.
I was constantly sending messages to her primary care physician accompanied by photographs. Paisley was referred to countless specialists. When she had her initial visit with gastroenterology, I was skeptical that there was a good reason for them to evaluate her. I was stunned when the doctor wanted to perform an endoscopy. Was it really necessary? Were there less invasive things we could do first? Nevertheless, I scheduled the procedure and tearfully watched as they wheeled her away.
After the procedure, the doctor told me her esophagus visually looked good. However, we had to wait one week to learn biopsy results. I’ll never forget the day I got them. The doctor said, “I have an answer, and I also have a solution.” The answer was eosinophilic esophagitis, and he went on to say the solution was strict food elimination or a combination of a steroid and acid reducer.
Food elimination never seemed like an option for Paisley. Her diet was already so limited. We had been so excited to introduce baby foods to her and she hated them – all of them. This made so much sense in retrospect. After weighing options, we proceeded with medications. I gave it time for the medications to work, and I followed up with the remaining specialists we were referred to. Unfortunately, Paisley was still struggling, and even worse, the doctor could not offer any help beyond the initial solution.
Paisley was choking, pocketing food, vomiting in her sleep, developing rashes, and just overall uncomfortable. These symptoms would present daily. We got a second opinion from another gastroenterologist, who changed her medication regimen. Though it put her EoE into remission, her symptoms did not resolve.
We made the decision to travel out-of-state to a third gastroenterologist. It was this doctor who completely changed Paisley’s life. Simple, yet profound, he asked, “What if EoE isn’t the root of all of these symptoms?” While he didn’t have all the answers, he did his due diligence in finding a team who did. This meant more referrals, more specialists, more appointments, more lab work, more tests, and more procedures.
Since that day, Paisley’s journey has been long and plagued with ups and downs. She was diagnosed with reactive airway disease and environmental allergies, folliculitis, Loose Anagen Syndrome, connective tissue disease and tracheomalacia, and had adenoids obstructing her airway, which she has since had removed.
Finally, we had answers to persistent symptoms. Though we [her parents and medical team] aren’t convinced we’ve identified all the pieces to the puzzle, we are happy with the progress and the improvements to Paisley’s daily comfort and quality of life.
What’s Next for Paisley
I am pleased to say she was approved for biologic medication, which she started early July. Our goal is to wean her off steroids in the hope that her adrenal function returns to normal and eliminates her adrenal insufficiency diagnosis altogether. We’re also incredibly hopeful this will improve her esophageal tissue. Despite her eosinophil counts staying low, her endoscopies repeatedly show inflammation and damage. We’re also hoping other symptoms resolve, including her asthma-like troubles and skin manifestations
Paisley Prompts Wisconsin to Recognize Awareness Week
I felt compelled to do my part to advocate for the EoE community as a whole. Each year, APFED celebrates National Eosinophil Awareness Week, in which landmarks light up. I was unsuccessful in getting local landmarks to light up, due to their lighting capabilities. However, the representative for the Wisconsin Capitol Building suggested I submit information for a Proclamation in honor of National Eosinophil Awareness Week. I did just that, and it was approved!
While we couldn’t “light up” the Capitol building purple, we put our own spin on it by dressing head to toe in purple. When we arrived at the Capitol Building, Paisley found the clicking of her heels to be hilarious. She stood in front of the building, and we read the Proclamation together. We discussed how far she had come with her treatment and how many others she could help by sharing her story. Those passing by stopped to comment on her “cuteness,” which we used as an opportunity to educate and spread awareness. The highlight of the day was seeing Paisley so proud of herself.
Spreading Awareness in Your Community
I don’t believe there is any one way to spread awareness in your community. The best thing you can do is understand your strengths and run with them. Further, identify things your child enjoys so that spreading awareness is fun. I have a passion for photography, storytelling, and social media. Paisley is an entertainer, who loves making her own vlogs. We paired this together and began sharing her story on TikTok (@PaisleySays). This educates anyone who watches and connects us with others who share the diagnosis.
Another way to bring awareness is by starting a conversation. A single conversation can lead to so much more, as it has for us. Paisley and I challenge you to start conversations — don’t be afraid to tell your story!
May 2025 Update from Ali Platt
Since sharing our story, we’ve continued working to uncover the full picture of Paisley’s health. We’ve identified more pieces of her medical puzzle, but it remains an ongoing journey. Paisley continues to receive injections of her biologic medication to manage her EoE. While it has helped in several ways, an endoscopy in March 2025 revealed active disease.
We’re now fine-tuning her treatment regimen in hopes of minimizing symptoms of food impaction, dysphagia, and vomiting. Despite the setback, we remain hopeful. Each discovery, each adjustment, brings us closer to understanding her needs and giving her the quality of life she deserves.
Behind the scenes of every medical update is the ongoing administrative burden that comes with complex care. As Paisley’s mom and full-time caregiver, I continue to spend countless hours navigating insurance denials, filing appeals, coordinating with multiple providers, and advocating for the coverage she needs.
While we remain focused on her health, the emotional and logistical toll of fighting for medical access is constant. It’s a role that requires persistence, organization, and endless energy.
Paisley’s case and our experience navigating a broken healthcare system, unfortunately, isn’t unique. That’s why it’s so important to advocate for continued research and spread awareness for eosinophilic disease. Every voice helps move us closer to change.
Editor’s Note:
APFED would like to hear from those who have had challenges with insurance coverage of an FDA-approved medication indicated to treat EoE. If you live in the U.S. and have been prescribed a medication to treat EoE, please answer a few questions to help us advocate for better coverage.
EoE Medication Coverage Survey
Share Your Story!
Tell us about the impact eosinophilic disorders have had on your life: apfed.org/share
