CLERMONT, FL (CNN) - His family calls him "the boy who can't eat" -- that's because he is allergic to food!
Four-year-old Silas Harger goes to the fridge to grab his favorite "special formula" drink box while his big sister, Esther, chows down on a sandwich. Sy has a disease called eosinophilic esophagitis, or EE, that doctors are still learning about.
It essentially makes Sy severely allergic to all food.
"Eventually, his esophagus would swell shut, and he would not be able to take food in orally, and he would be on a feeding tube indefinitely," said Sy's dad, Jordan Harger.
Sy's parents are doing all they can to prevent that. They've started going to the Cincinnati Children's Hospital for treatment and tests.
Sy's mom started blogging on their trips, just to keep loved ones in the loop, but soon, she started hearing from other families coping with EE. "And that's really now why I do it just to reach out to people, so that they don't have to go through the first 3 1/2 years that we went through trying to find a diagnosis," said Heather Harger.
For a little boy once obsessed with food, Sy's parents say he has adapted surprising well without it. And they've found other ways to fuel his excitement. "Since Sy was 2-years-old, bowling has been his passion," said Jordan.
His family is now looking at having some bowling-themed community fundraisers to help cover his medical costs. "That would help us continue on a treatment plan that he is on that we don't really have any way of doing long term," his father continued.
Sy's father, who is starting work as a firefighter soon, says the doctors want to see Sy every six weeks at the hospital in Cincinnati to see if they can re-introduce one food at a time. But the family knows there is no cure for EE, so Sy's long-term treatment is largely trial and error. "We let today take care of itself, and tomorrow has enough worries of its own."
So, instead, the Hargers fill it with hope. "Just to be as normal -- whatever normal is -- as possible, you know. But just to be like the other kids, that would be my hope for him," Heather concluded.