(HOWELL, N.J.) -- Fallon Schultz, a 28-year-old clinical social worker from Howell, N.J., has known since her son Landon was two weeks old that something was wrong.
He had horrible eczema and would scream day and night, projectile vomiting after feeding as if he were allergic to her own breast milk. At her pediatrician's advice, Schultz switched to soy and then to a nutrition formula, but it got much worse. Landon had diarrhea filled with blood and mucus, 10 times a day, and soon he began bleeding from the worsening eczema under the hair on his head.
After consulting with various doctors, Schultz finally got a diagnosis in 19 months later. Landon was found to be suffering from food protein induced entercolitis syndrome, or FPIES, a condition so severe that Landon can only eat five foods: ripe strawberries, blueberries, avocados, grapes, raisins and elemental formula.
Landon was diagnosed by doctors at the Children's Hospital of Philadelphia. And now the hospital's foundation has agreed to join Schultz in setting up her new nonprofit, the FPIES United Family Fund to support education and advocacy, and to find a cure for the syndrome. She is hoping to raise an initial $300,000 from corporate sponsors to raise awareness.
"Local doctors don't know about the disease and because that they don't pick it up. [Landon] has permanent damage and is not going to get better," said Schultz. "If you don't have something that is cookie-cutter, they think you are crazy. I am trying to turn something that has been a nightmare to help someone else's child. It's been a long two years."
Doctors don't even have an ICD-9 code to diagnose FPIES, according to the United Family Fund, which is pushing for that medical diagnostic tool.
"Our lives have been taken over by FPIES, and I am just trying to do everything I can as a mother to help him and other children affected by this cruel disease," she said. "I want to do something big. I want these kids to be better. It's not good enough for my son and/or the kids going through this."
Landon cannot eat 27 fruits, vegetables, milk and soy products, grains and meats. If he does, he is in excruciating pain. Then, for days afterwards, his body fights the proteins in the food, damaging his gut and causing such dangerous vomiting and diarrhea that he runs the risk of going into a septic-like shock.
Experts have no idea how many children suffer from FPIES. Most will outgrow it in four or five years, but Landon's case is so severe, no one can predict his prognosis, according to Schultz.
Copyright 2011 ABC News Radio