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Searching for a cure: Eosinophilic esophagitis
PHOTO: Kimberley Alexander
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.
For as long as A. Jay can remember, his life has consisted of food restrictions, medications, hospital visits, biopsies and social isolation. 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.
I can remember a conversation we had the following December. I asked him, "What are your goals for 2017?" His response broke my heart. "I would like to be able to eat again." I struggled to hold back tears; he wanted to enjoy such a basic thing, food. It's easy for us to take the ability to eat for granted – it’s as natural as walking and talking. But for A. Jay, it's different. He 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.
Not much has changed
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.
A. Jay attends public school every day. Most teachers use food as incentives, and lunchtime is a shared social hour where everyone enjoys a meal but him. He has to participate in modified gym activities to ensure he doesn't get hurt. He can't share Thanksgiving dinner or a birthday cake with his family and friends. On Valentine's Day, he'll politely receive his candy – only to come home and give them away. He can't share pizza with us on movie night, and we rarely go out to eat at restaurants as a family. EOE has fundamentally changed the DNA of our family, and the meaning of childhood for A. Jay.
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.
We continue to search for a cure
On Saturday, May 18, 2019, A. Jay's Fight, Inc., will host its third annual 3K Super Hero EOE Walk. The walk will take place from 9 a.m. to noon at Hackberry Park (7777 S Dairy Ashford Rd, Houston, TX 77072) and will include 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 visit our website.
Each year, we've raised more than the last. This year, we hope to do the same! Let's make a difference for every child facing the barriers created by EOE. Let's find a cure!