By Allison Garrett, Intern, Norfolk Academy
Kristine first started to become concerned when her two-year-old son, Zeq, weighed only nineteen pounds and was severely malnourished. His body rejected all foods, and Kristine was forced to continue breast-feeding him since that’s the only nutrition he could tolerate. When she took him to get checked for allergies, his tests came out positive for every food. The doctors thought it was a skin disease; Zeq was scratching his arms and face until they bled. A doctor recommended they schedule an appointment with a dermatologist at Johns Hopkins Medical Center in Baltimore, Maryland. The dermatologist at Hopkins knew Zeq’s problem was bigger than a skin disease. The family, who traveled to Baltimore from their home in Virginia Beach, Virginia, saw an immunologist that day who diagnosed Eosinophilic Esophagitis or EoE. Kristine recalls, “I felt like the weight was lifted off my shoulders and thrown right back at me.” Her husband, Mark, works as a shipyard electrician.
EoE is considered a rare disease. It occurs when eosinophils, a type of white blood cells that normally are found in the bloodstream but collect in the esophagus instead. These cells attack foreign objects in the body to protect from disease and infection, but in the esophagus they are deadly. The eosinophils attack any food the patient swallows as if it were a foreign object, virtually making the patient allergic to every food. To diagnose EoE, immunologists take an upper endoscopy and a biopsy of the esophagus to estimate the amount of eosinophils in the patient’s esophagus. One thousand eosinophils in the esophagus is considered high. Zeq had 80,000!
When the physicians at Johns Hopkins diagnosed Zeq, they knew his case was very serious. They asked the family to stay over Christmas. Zeq has 11 doctors working together on his case. These include an immunologist, dermatologist, and nutritionist as well as many others who work together to evaluate his digestive system. Zeq received a chemo drug, metrotrexine, to reduce the amount of eosinophils in his esophagus and the inflammation in his gut. He also started using a feeding tube to eat which he still uses every four hours; each feeding takes one hour. Without a home nurse Kristine must wake up twice every night to administer Zeq’s feeding tube. The Commonwealth of Virginia does not require feeding tube formula to be covered under health insurance, and without it the formula costs $5,000 a month. Thankfully for Zeq’s family, their insurance is based in Maryland. The entire cost for Zeq’s treatments, travel, and medications is staggering—around $35,000 a year.
Fortunately, Angel Wheels has been able to relieve the burden and expense of travel—the family has to go to Baltimore at least once a month and sometimes more.
Kristine found out about charitable travel options through her priest at Holy Spirit Catholic Church. After a trip to Johns Hopkins in May, the family used Angel Wheels for Zeq’s next appointment, traveling with Amtrak. Because of help with travel, “we’re seeing the best doctors in the world,” Kristine said.
Zeq’s condition has significantly improved. Soon to be three, he now weighs 31 pounds and runs around like any little boy, playing with his five-year-old sister, Mia, and enjoying the summer. In fact, he progressed so much that in February he started start to eat fresh, organic fruits. “I cried when the immunologist gave him an apple,” Kristine notes. He continues to eat only fresh fruits and vegetables, and hypoallergenic lollipops.
Kristine energetically spreads the word about EoE to help raise public awareness and help other affected families. “The disease is on the rise,” she says and is commonly misdiagnosed. “People don’t realize that there are over 300 families just in Hampton Roads who have a family member with EoE.” She also advocates through Zeq’s Facebook page, “Zeq’s Journey” and held a fundraiser that brought in $2,600 for Zeq’s travel expenses and medications. This brave little boy’s story has been featured on Fox Baltimore and WAVY-TV.