MARINA DEL REY (CBSLA.com) — For Jen Lazarus, baking in the kitchen with her toddler, Zach, seemed like an impossible dream a couple years ago.
For the first 14 months of Zach’s life, he existed only on breast milk after every single type of food made him violently ill
“He never had a birthday cake and that’s sad,” she said. “It’s scary because if a crumb falls on the floor or a friend gives your child an apple, your child can end up in the hospital for days.”
Zach has a rare form of food allergy called FPIES, which is short for food protein-induced enterocolitis syndrome.
“What that really means is that it is a severe form of a food allergy that affects the GI system,” said Autumn Shirin, Zach’s pediatrician.
What that means for Zach is that he can only tolerate 12 foods. Specifically, maltabella (made from sorghum), quinoa, beef, eggs, broccoli, Brussels sprouts, pears, gluten-free matzah, kedem kosher grape juice, olive oil, peas, and tuna.
FPIES affects every child differently and each can tolerate different foods.
Shirin says FPIES can keep kids from growing and thriving or worse.
“It can cause really an acute reaction where he gets very dehydrated, he can go into shock, it can be life-threatening,” she said.
Zach’s younger brothers, 6-month-old twins, are now showing signs of FPIES.
“You could sit there and you could say, ‘Why us? Why did this happen to us?’ ” Lazarus said.
Instead, the Lazarus family hopes Zach’s story will help change the way society looks at severe food allergies.
“My hope for Zach is that he will take this experience with FPIES and be an advocate for other children, for other people with special-needs, or who are different and that he will help them live what most people would consider to be a normal life,” Lazarus said.
Some children will outgrow FPIES by about the age of 3 but Zach is 3 ½ and shows no signs of getting better.