Searching for a cure: Eosinophilic esophagitis
A. Jay is 10 years old with a smile to light the room, the personality to energize a crowd, the heart to conquer all and the strength to fight his own personal giant. That is what he does every day. You see, A. Jay was diagnosed with a little known, chronic immune system disease called eosinophilic esophagitis (EOE) when he was 18 months old. Eosinophilic esophagitis is an allergic inflammatory condition of the esophagus that involves eosinophils, a type of white blood cell, which can make it difficult to eat. For as long as he can remember, his life has consisted of food restrictions, medication, hospital visits, biopsies and social isolation. We fought for nine years trying to figure out what would work for him, but on July 5, 2016, it became necessary to have a feeding tube put in and to restrict all food.
I can remember a conversation we had in December. I asked him, “What are your goals for 2017?” His response broke my heart. A. Jay said, “I would like to be able to eat.” I held back tears as I looked at him wishing for this very basic thing, food. Most of us take the ability to eat for granted; it is as natural as walking and talking. But for A. Jay, it is different. He spends 19 hours a day attached to a line that pumps medical food into his stomach. He carries it in a backpack everywhere he goes.
A. Jay attends public school every day. Teachers use food as incentives and social hour is lunch where everyone has a meal but him. He has to participate in modified gym activities to ensure he doesn’t get hurt. There are no birthday cakes or Thanksgiving meals he can share with friends and family. On Valentine’s Day, he politely took the candy gifts, came home and gave them away. We don’t share in movie and pizza night as a family or go out to eat at restaurants. EOE has changed the DNA of family for us and the meaning of childhood for A. Jay.
Yet still, with all he faces, he pushes forward every day praying for a cure. He enjoys volunteering to help other special needs children in school. One of the smallest children his age, A. Jay moves through every day like a giant. He is brave and loving, funny and smart, humble and giving; he gives me the strength to be his mother.
We continue to search for a cure.
On Sunday, April 23, 2017 the Interfaith Club of The University of St. Thomas will sponsor the inaugural 3K Superhero EOE Walk. The walk will take place from 9 a.m. to 3 p.m. on the college’s campus and will feature games and activities for all families. All proceeds from the walk will be donated to EOE research, right here, at Texas Children’s Hospital. For more information, please email firstname.lastname@example.org or click here to register.
Let’s make a difference for every child facing the barriers that EOE creates, Let’s find a cure!