Boy Who Is Allergic To Food Hopes for Cure
For more than ten years, 12-year-old Ben McGrath has been hooked up to a feeding pump to get the nutrition he needs. That’s because this boy is allergic to food, a rare condition he hopes to be cured of some day.
Both of Ben’s sisters had milk intolerances as infants, but when Ben was born, his mother Jocelyn knew that her son’s reactions to milk were far worse than those associated with such an intolerance. According to the Guardian, Jocelyn noted that “Ben was always agitated, he was thrashing about and in a lot of pain.” Eventually she said that “whenever I’d feed him he would scream, his body would spasm and he’d be in pain for hours.”
Ben’s condition baffled doctors until the boy was 18 months old, when physicians at Great Ormond Street hospital in London diagnosed the child as having eosinophilic enterocolitis allergic enteropathy, a rare condition in which the body recognizes food as an invader and thus tries to get rid of it.
Eosinophils are a type of white blood cell that contain substances designed to fight infections. Normally the blood does not have a large number of eosinophils, but the body may manufacture more in response to allergic disorders or infections.
According to the American Partnership for Eosinophilic Disorders, eosinophilic gastrointestinal disorders are subdivided into organ-specific diagnoses. In Ben McGrath’s case, his condition affects his colon and small intestine, “enterocolitis.” Eosinophilic disorders can also affect the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), stomach and small intestine (eosinophilic gastroenteritis), and large intestine (eosinophilic colitis).
Before Ben’s condition was diagnosed, his young body had suffered from months of severe spasms and internal bleeding. Since his diagnosis, Ben has been taking large amounts of medication to heal the internal damage. He must also be fed a special elemental formula through a feeding tube that is inserted directly into his stomach. The formula is supplied over a 10-hour period every night and provides 70 percent of the medication and nutrients the boy needs.
Ben is able to eat fruit and bread, but only in small amounts. When he eats other foods, his body reacts. His father Walter, noted in a Guardian article that “He can eat other things like ice-cream, but there is a price to pay and his body will have a reaction, and he knows that. Some foods make him quite aggressive, others drain his energy.”
Currently Ben is trying a new therapy under trial at Great Ormond Street, and he is hopeful he will be able to remove the feeding tube by the time he is 15 years old. Ben’s parents have always encouraged their son to live a normal life, and with removal of the feeding tube, he hopes to be able to do just that.
The American Partnership for Eosinophilic Disorders notes that the diagnosis of an eosinophilic disorder is life-altering. In addition to the serious physical signs and symptoms (e.g., nausea, vomiting abdominal pain, diarrhea, bloating reflux, difficulty swallowing, anemia, malnutrition, sleep problems), it is a challenge to live in a society that focuses on food when you are allergic to food. Ben McGrath knows how difficult it can be. Hopefully the new therapy will allow him to be free of the feeding tube and able to eat food that now makes him ill.
American Partnership for Eosinophilic Disorders
Guardian, Jan. 3, 2010