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.
Schultz gave him wheat when he was a toddler and found him in his crib after a nap, "in a pool of vomit completely limp." She rushed him off to a gastroenterologist who said it was only a virus.
"I was hysterical," said his mother. "She kept telling me I was a new mom and to stop worrying -- everything would be fine and things could be worse. It was like a smack in the face."
At one point, Landon lost two pounds in two weeks and had virtually stopped growing. Desperate, after Schultz found "orange, jelly stuff" -- undigested food, skin and blood in his diaper, she sought help from specialists.
Later, she learned that her baby's colon was hemorrhaging.
It took Schultz 19 months to get a final diagnosis -- 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.
"These kids are fighting natural food and adapting to artificial food," said Schultz. "He can have artificial flavoring, but not Italian ice with natural flavors like pears."
Schultz drew from every emotional reserve she could find to save her son, who is now 2, logging 482 phone calls to fight with her insurance company, which refused to pay for his formula and the an initial $500 visit to Children's Hospital of Philadelphia (CHOP).
Numerous medical specialists dismissed her concerns and she even received an anonymous letter accusing her of having Munchausen syndrome by proxy -- a mental illness in which a parent fabricates the sickness of a child in their care.
Landon was eventually diagnosed by doctors at CHOP. "They diagnosed him in 10 minutes," said his mother. "I can't explain the feeling. It was bittersweet -- terrifying, and a relief."
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.
No other organizations exist for FPIES.
"Local doctors don't know about the disease and because 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."