While most toddlers get to enjoy nutritious delicious foods at snack time, Leah Carter has no choice but to feed her 16-month-old son ice chips.
Elliot Carter has a condition called food protein-induced enterocolitis syndrome (FPIES), which is a rare food allergy commonly triggered by dairy or soy products.
Doctors first discovered the toddler’s condition when he was taken to the hospital when he was only 3 months old. Elliot was admitted for a surgical correction of layrngomalacia, which is basically a floppy tissue that partially blocked his airway.
It was during that visit that doctors noticed a significant decrease in Elliot’s growth–dropping from the 75th percentile to the third.
“It was then he was formally diagnosed ‘failure to thrive,'” Leah told The Huffington Post. “A title that we can’t quite seem to shake.”
The official diagnosis of FPIES came when Elliot was 5 months. And, later on at 9 months, he was diagnosed with mast cell activation syndrome (MCAS.)
The result of Elliot’s conditions means that any foods other than breast milk and ice chips will cause a reaction in his body, leading him to vomit.
Leah told HuffPost that Elliot is now on nutritional life support after exhausting all other options, including prescription hypoallergenic formulas. The life support is administered through a PICC (peripherally inserted central catheter.)
But Leah, who left her career as a pediatric nurse to take care of her own son, is not giving up hope.
After a bit of hesitation, Leah allowed her parents, sister, and Elliot’s godfather to set up a GoFundMe Campaign to raise money.
Since then, Leah has received overwhelming support from all over the globe, from people she refers to as #ElliotsArmy.
“Someone, somewhere will know how to help Elliot,” she said. “And I won’t stop sharing our story until I find that person.”
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