Parenting comes with a myriad of challenges, but nothing could have prepared us for the journey we’ve been on with our son, Ethan. We’re so thankful for the Ronald McDonald House because without their support he wouldn’t have been able to receive the care he so desperately needed.
From the time he was just two weeks old, we noticed something wasn’t right. Ethan couldn’t tolerate breast milk, and his days were filled with crying and constant spitting up. While many would dismiss it as colic, our situation turned out to be far more complex.
As we tried different formulas, Ethan’s condition only worsened. His spitting up became more severe, and tests revealed blood in his stool—a sign of a milk protein allergy. Despite my best efforts to eliminate dairy and soy from my diet, it became impossible to maintain a healthy lifestyle while nursing. We eventually switched to an amino acid-based formula, but the projectile vomiting persisted.
Our first gastroenterologist (GI) insisted that Ethan would eventually outgrow the problem, advising us to add oatmeal to his bottles to help with reflux. But by nine months, Ethan was still struggling to swallow even the most basic solid foods and continued to vomit daily. While we managed to keep his weight stable by re-feeding him after each episode, our concerns were largely dismissed.
At 12 months, after our persistence led to a referral to an ENT specialist, we finally began to find answers. The ENT was the first to mention Eosinophilic Esophagitis (EOE), a rare condition where the body’s immune system attacks the esophagus in response to allergens—dairy and soy, in Ethan’s case. At 14 months, an endoscopy confirmed the diagnosis. It was a bittersweet moment: heartbreaking to learn that something was indeed wrong, but a relief to finally have clarity.
While we began treatment, it quickly became clear that our GI wasn’t equipped to handle such a severe case. That’s when we sought out an EOE specialist at Orlando Health’s Arnold Palmer Hospital for Children, and our lives changed for the better. Under the care of Dr. Smadi, Ethan’s condition improved. However because the diagnosis had come so late, Ethan had missed critical milestones and was still only able to eat stage 2 baby purees.
When Ethan’s condition took a turn for the worse in December, and his motility shut down due to a stomach virus, we found ourselves in a desperate situation. The local hospital’s care wasn’t working, and Ethan lost four pounds in a week—an alarming amount for such a small child.
We knew we needed to get back to our GI team at Arnold Palmer, but with Ethan’s fragile state and the need for ongoing treatment, the logistics of travel and accommodation were daunting. That’s when we were welcomed into the Ronald McDonald House on the campus of Orlando Health.
The Ronald McDonald House supported us through multiple hospital admissions and, most importantly, his enrollment in the intensive feeding therapy program. This program teaches Ethan how to eat and chew so he can bounce back from the developmental milestones he was forced to miss.
The Ronald McDonald House has truly been our lifeline. Without their help, getting Ethan the specialized care he needs for EOE and his feeding issues would have been nearly impossible, and for that we’re forever grateful.
Parents don’t know when their children will need medical help. But they should know they can always access the care they need. And with your help, we can support them all throughout their journey.
