Enduring Hope and Harmonies Through EoE: John’s Story

In early December the Vernon Hills High School Chamber Choir delivered holiday cheer that was music to our ears – and for one singer, it was extra special.

John, a talented junior, has found his place on many teams and activities at school: soccer, orchestra, student council, theater and of course choir. But before he settled into all these passions, he had to find his way back to his voice freshman year.

Just as the 2023 school year was approaching the holidays, John began having unusual reactions to food – gagging, vomiting and difficulty swallowing – many resulting in ER visits without a cause determined. After continued concern over his symptoms, he was transferred to Lurie Children’s for additional testing in early 2024. His team of gastrointestinal specialists discovered he was struggling with Eosinophilic Esophagitis (EoE) – a chronic condition where a buildup of eosinophils (a type of white blood cell) inflames the esophagus, making swallowing difficult and/or painful, or causing food to get stuck. By the time John was admitted, the previously undiagnosed EoE had worsened and soon he was unable to eat by mouth altogether. His esophagus had narrowed from 18mm to 6mm.

John remained inpatient for several weeks, and a feeding tube was placed to ensure he was receiving the nutrients he needed. The experience was an extremely challenging one but, as his mom Michelle says, “John is not one to give up.” With time, he adjusted to the feeding tube and despite fears of a jeopardized singing voice, found moments in the hospital to test his talents. To his mom and care team’s delight, he hadn’t skipped a beat.

Months of procedures, adjustments, and perseverance later, John reclaimed his health and many of the joys he had to pause while he got better. He returned to school with a feeding tube and once it was removed, he auditioned late for the Chamber Choir – an opportunity he had missed while hospitalized – making it as one of only two sophomores selected.

With the support of his family and his peers, John continued to reshape his life post hospitalization, not only catching up but thriving and shining. And on top of it all, has consistently earned Honor Roll recognition since starting high school!

“He just kept pushing and trying, and if he failed, he got up and tried again,” says Michelle.

Nearly two years ago, John dreamed of singing freely again and sharing his love of music with the patients, families and staff at Lurie Children’s. Last week, we got to witness this come full circle in a concert that lifted everyone’s spirits. Skylight TV and the Family Services team in the Panda Cares Center of Hope were huge supports during John’s time inpatient, helping to bring him meaningful moments of levity and distraction via entertaining game shows and fun activities that made always him feel like a kid. This holiday season, Skylight TV will broadcast the chamber choir's performance for inpatient families to listen, this time John on the other end of spreading comfort and joy.

The experience as a whole has made such an impact on John that Michelle says a career in healthcare may be in his future, too. Wherever his talents take him, we’ll be cheering him on. 

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