PHOENIX — Like most kids, little Ari Flicek loves cookies. Like most moms, Athena Flicek is happy to see him eating fruits and vegetables.
But unlike most families, the Flicek’s long struggled to get Ari to eat anything.
“When Ari was born he started having eating problems almost immediately,” his mom said.
Ari is one of two children in the country to be officially diagnosed with a rare disease, called Pediatric Feeding Disorder (PFD), that makes eating painful — and scary.
“First it was pushing away and then it became outright refusal, and then it became anger,” said Natalie Peterson, whose son, Easton, is the second child in the country to be diagnosed with PFD.
“It started to become dangerous for him with choking, vomiting, and just watching your kid struggle for air when they’re trying to eat," she said.
According to Feeding Matters, a local nonprofit organization that has treated both Ari and Easton, PFD affects one in 37 kids under the age of five, and can impact entire families from everyday meals to milestones, such as birthdays and celebrations.
Flicek and Petersen both said their sons were disinterested, even afraid to touch or smash their first birthday cakes.
“We bought him a cake, put it in front of him, and he wouldn’t touch it,” said Petersen.
For Ari, the fear of eating also led to malnutrition and misdiagnosis.
“Doctors would say he’s not gaining enough weight. He was coded as failure to thrive."
Medical codes determine treatment options so, until recently, families like the Petersen's and Flicek's had no plan forward. But last month, the CDC gave PFD two stand-alone diagnosis codes, which opens the door for families to get help.
“The correct coding helps give you a direction, like this is where we’re gonna go.”
It also provides more reliable insurance coverage for so-called eating therapy, which includes everything from getting comfortable with sitting in a high chair to trying new foods.
“He knows he’s not gonna choke, he knows he can investigate food on his own, he’ll be okay and he’ll go sit in a chair willingly to try new foods,” said Flicek.
“It just felt like a whole new world was opening up to all of us.”