Boy with Rare Disease Lives Up to His Name

By Stephanie Singer, Intern, Virginia Wesleyan College

zeq and Kristine in plane“He’s going to be his own prophet. He’s going to write his own book.”

These thoughts passed through Kristine’s head when she first held her son. She named her son Ezequiel, an alternate spelling of the biblical name Ezekiel. The name means “God’s strength,” a unique spelling reflecting the boy’s individuality.

Another Opinion At two years old, Zeq, as he’s called, weighed only 19 pounds and was severely malnourished. Doctors thought he had food allergies. Kristine disagreed; it was impossible to have allergies to every food. She drove to Baltimore, Maryland, hoping another doctor could help her son. “We needed a fresh set of eyes,” she said. At the hospital, an immunologist diagnosed Zeq with eosinophilic esophagitis, or EoE. Eosinophilic esophagitis is a chronic immune system disease. It occurs when white blood cells build up in the esophagus and attack substances such as food. Complications include scarring and tearing of the esophagus, vomiting, and severe weight loss. Angel Flight to the Rescue After learning of Zeq’s diagnosis, Kristine went to some internet forums that she regularly participated in and asked if there was anyone who could help get them back and forth to Baltimore from their home in Virginia Beach, Virginia. She got an answer: Angel Flight. The charity has been providing flights for Kristine and Zeq, who will be six in July, for three years. The most recent Angel Flight was donated by volunteer pilot Richard Linsenbach. Richard served in the U.S. Air Force before joining Angel Flight. He’s been Pilot of the Year in Pennsylvania for three years straight. “I expected him [Zeq]  to be weak and sickly,” Richard said. Instead, the boy was curious, energetic, and very observant – as if illness had no hold on him. Up, Up, and Away Richard had to deal with one unexpected complication before the trip. News companies tried to pressure him into letting reporters come, but he adamantly refused. Reporters with cameras would be unsafe during the flight. The flight from Baltimore was turbulent. Kristine clutched her seat, but Zeq appeared unfazed. Richard noticed that he was cheering: “Clouds, clouds, clouds!” When they arrived at their home airport in Norfolk, the employees there literally rolled out a red carpet for the little boy. Kristine is grateful to the pilots. “They’re another part of the family.” Comfort from Tubie Bear When a child has a feeding tube and goes to countless hospital appointments, it can be pretty scary. Luckily, one of Kristine’s friends made a teddy bear for Zeq and inserted a feeding tube into where the bear’s stomach would be. They named it Tubie Bear. The doctors would first treat Tubie Bear to show Zeq exactly what would happen during that appointment. This made it less frightening. Outstanding Family Zeq has a sister named Mia who’s raised $10,000 for charity and set a record for volunteer hours in her community. She has stayed by her brother the whole time. “Mia wants to be president,” said Kristine. “I said, go for it!” Kristine believes that what seems abnormal is actually normal. She uses the term “differently abled” instead of “disabled.” She’s active in the political scene, lobbying for differently abled individuals. A New Normal When the feeding tube finally came out, Zeq couldn’t have been happier. “Great,” he exclaimed. “I can go play basketball now!” He’s now a healthy young boy. He enjoys basketball, soccer, and riding bikes. Though he no longer has a feeding tube, he avoids dairy, nuts, and some proteins. When a classmate has a birthday and brings cupcakes, Zeq is no longer left out. “It’s a new normal,” said Kristine.  Twice a year, he sees a doctor for a check-up. The medical community has some of his DNA to research cures for EoE. Ezequiel’s journey demonstrates power in an unexpected way. We can’t help but think he’s a superhero!                  


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