Searching for a cure: Eosinophilic esophagitis

Searching for a cure: Eosinophilic esophagitis

A. Jay is a 12-year-old with the smile to light a room, the personality to energize a crowd, the heart to conquer mountains and the strength to fight his own personal giant. This is simply what he does every single day. 

A. Jay was diagnosed with a rare, chronic immune system disease called eosinophilic esophagitis (EOE) when he was 18 months old. EOE is an allergic inflammatory condition in which eosinophils (a type of white blood cell) accumulate in the esophagus, making it difficult to eat. It only affects 10 in every 100,000 people. 

We tried to figure out what would work best for him for nine long years, but on July 5, 2016, A. Jay had to get a feeding tube and all food was restricted. 

In December I asked, "What are your goals for 2017?" His response broke my heart. "I would like to be able to eat again." It's easy for us to take the ability to eat for granted. A. Jay spends 10 hours a day hooked up to a line that pumps medical food into his stomach. He carries it in a backpack everywhere he goes. 

Three years later, A. Jay is at a healthy weight because of his feeding tube, but he's still unable to eat most foods. Currently, he can eat peaches, apples, beef, eggs, onions and green peppers. 

Yet still, through it all, A. Jay pushes forward each day and prays for a cure. He enjoys volunteering to help other special needs children at school. Even though he's one of the smallest among his peers, A. Jay moves through life like a giant. He is brave and loving, funny and smart, humble and giving; he gives me the strength to be his mother.