Finding Hope for the Future
Zachary's mom, Crystal Voss, believed something was wrong with her son when at his 1-year check-up he had not gained any weight since his doctor's visit three months earlier. Zachary was also running a high fever and had severe diarrhea, but lab tests kept coming back negative for viruses, bacteria and parasites. After numerous visits to GI specialists and a hospital stay because of dehydration, Voss took Zachary to Duke Children's Hospital where she finally got some answers. Zachary was diagnosed with eosiniphillic esophagitis (EE), a rare autoimmune disorder.
Eosinophilic disorders occur when the body reacts to triggers by creating too many white blood cells (eosinophils). Eosinophils are meant to attack parasites, but the body of a child with EE mistakes food for a parasite. As a result, the build-up of eosinophils cause numerous and very serious health problems such as failure to grow and thrive, uncontrollable vomiting, severe stomach and throat pain, inability to sleep, and joint pain.
In addition to EE, Zachary also suffers from congenital sucrose-isomaltase deficiency, another rare disorder, which means that his body lacks the enzymes it needs to digest sugar and starch. Because of these two complicated disorders, Zachary receives all of his nutrition through a feeding tube or G-tube on his stomach.
Because of the rarity of Zachary's conditions, there are only two hospitals in the U.S. that have a specialized program for children EE. Zachary receives care from Cincinnati Children's Hospital.
Despite his challenges, Zachary remains a happy, strong child, which gives Voss and her husband the hope and determination they need to stay positive and focused on finding solutions to help Zachary so he can live a normal life.
"We have been overwhelmed by the generosity from family and friends who helped raise money so we can take Zach to receive specialty treatment in Cincinnati," Voss said. "This gives us and Zach the hope that he can one day eat real food."